In all honesty, I was a little hesitant to write my story for the Fetal Hope Foundation because it did not have a happy ending.  But after much thought, I realized that my story could help others cope with a loss and possibly provide some kind of hope.  Because I am human and dealing with the raw emotions of losing children, I had to really put a filter on my thoughts.  I had to weed out the anger and resentment in order to expose the hope that I have found today.  Instead of going into all of the details about my pregnancy, I will paraphrase my story in order to reveal my spiritual journey.   At 12 weeks the doctors noticed extreme swelling in one of the babies’ heads.  At this point we were given every possible terrifying scenario.  For four weeks we tried to go about our lives without any real answers until finally at 16 weeks we were diagnosed with twin to twin transfusion (TTTS) along with selective intrauterine growth restriction (SIUGR) in one baby.  TTTS is a rare condition found in identical twins where the babies share a placenta, causing difficulties in equal nutrition, blood flow, amniotic fluid levels, etc.  After seeing a specialist and undergoing surgery at 18 weeks to help save the baby girls, their health was finally showing signs of improvement.   Praise the Lord!  Unfortunately, the good news was quickly followed by pre-term labor at 23 weeks, and Rosemary and Sophie could not survive.  

These past two years have been such an emotional roller coaster for me.  I have experienced every possible emotion a human can experience.  I have been completely broken.  The sadness, anxiety, and fear were so overwhelming that I had to remind myself to breathe.  A great deal of soul searching had to be done this year because after losing babies I began to doubt everything I ever believed in.  I had been a Christian for about 22 years when I lost my girls.  I actually thought that God had protected me all of these years because I was faithful.  So when my prayers were not answered, I was in shock.  It felt like the breath had been knocked out of me.  It’s just not natural to hold your babies one day and plan a funeral the next.  So it was at this point I had to re-examine my life and what it meant to be a Christian. One can imagine the heartache a person experiences after losing a child.  Through my raw emotions and questions, my goal is to help lead others to hope.1)  Why did God take my babies?  2)  Will this grief end?3)  What is faith?4)  What does my future hold?   

1)  Why did God take my babies?  If you have ever lost a child, this is probably the first question that enters your mind.  In order to move forward in my journey, I had to realize that God does not take children, he welcomes them.  “Jesus said, ‘Let the little children come to me and do not hinder them, because the kingdom of heaven belongs to such as these.”  Matthew 19:14.  You see, Rosemary and Sophie were never really mine to begin with.  We are all God’s children and we are put on this earth to worship him especially through our sufferings.  My girls never have to suffer like the rest of us.  They will rest peacefully with Christ and wait on my arrival.  Does this mean that I am not sad, angry, doubtful, or scared?  Absolutely not.  But my life can only move forward if I trust that the Lord will take care of my heavenly children while at the same time will take care of my life here on earth.   2)  Will this grief end?  I have also learned that God never promises us a life free from pain, but he does promise to be by our side.  He will never abandon you.  There have been many days when I have felt completely alone, like He has forgotten about me.  There are many difficult situations I faced and still face after my loss.  So my answer to Will this grief end, is I don’t know.  The feeling of sadness is still there but it’s not overwhelming anymore.  The most important thing I had to re-teach myself is that everything good is from God.  At the end of the day, I think of all the good things in my life: my loving husband, my precious 4 year old daughter, my amazing friends, etc.  The good news is the Lord already knows my heart, my needs, my problems and all I have to do is lay them at his feet, and He will carry those burdens for me.  My God is a compassionate God, and he holds every one of my tears in hands.  He hurts too and for some reason I find that comforting. 

3)  What is faith?  During my self reflection, I have learned that if we always knew why we were suffering, our faith would have no room to grow.  And at least I can say that my faith is stronger today than it was a year ago.  “Now faith is being sure of what we hope for and certain of what we do not see.”  Hebrews 11:1.  I think that walking in faith is sometimes like walking in darkness.  We are supposed to walk by faith, not by sight, so how do you do that?  For me, I had to give up total control in my life’s circumstances.   Let go and let God!  The hardest thing I had to accept was that my plan and God’s plan were not the same.  The more I tried to plan my future, the more disappointed I was.  When I finally accepted that the Lord is truly in control of my life (whether I like it or not), an unexplainable peace overcame me. 4)  What does my future hold?  I will say again that the anxiety I faced after losing the babies was overwhelming.  I worried mostly about the future and about things that never bothered me before:  Will I loose my husband?  Will I lose my only child?  Will I get pregnant again?  Will I lose that child?  After reading several books (I will list them at the end) I realized that if we are walking in anxiety, we are not walking in faith.  It is so important to live one day at a time and at the end of the day, just think…..I made it through one more day and good things actually happened today.  The uncertainty of the future can be a scary thing after a loss.  I have listed some of my favorite scripture/quotes that help me to live one day at a time.

• “So don’t be anxious about tomorrow, God will take care of your tomorrow too.  Live one day at a time.”  Matthew 6:34. 
• “For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you hope and a future.”  Jeremiah 29:11.
• “Don’t let what you don’t know about the future destroy the joy God wants to give you today.”  Ecclesiastes 8:17. 
• I know not what the future holds, but I know who holds the future.

The last subject I have really struggled with is What is my purpose here on earth?  Will any good come out of my loss?  I really had to turn the corner on this one.  I was so deep in my sadness that I was becoming self-centered.  I was letting my grief get the best of me at a time when I should be growing and learning.  I realized that there were families that really needed my help, but I had no idea how to make a difference.  Once again, I had to turn to the Lord to lead the way, and that’s when the Fetal Hope Foundation became a clear avenue for me.   

The Christmas after I lost the twins, I painted pink crosses on a mini canvas and hung it with pink ribbon on my Christmas tree.  After that I decided it was time to pursue my artwork again (a hobby that had been put on hold due to the busyness of life).  At the same time my heart was heavy for not helping others in similar situations, so I decided to invite some friends over for an art show at my house with one other artist.  We agreed to give some of the proceeds to Fetal Hope Foundation.  Well, due to overwhelming interests, within a couple of weeks my tiny art show had grown to 26 artists, 46 volunteers, and 63 silent auction donations (with the help of some very generous friends)!  The first annual Art for Hope was held at a local country club, and hundreds of people attended to support those families affected by fetal syndromes.  With generous donations and proceeds from artwork, we raised over $5,800 with less than a month’s planning.  Isn’t it amazing to see God at work?  Art for Hope was His listening, His loving, His doing.    My prayer for you is that through my spiritual journey of heartache, I have somehow provided hope for you and your family. “Grief without God’s presence ends in despair.  Grief with God by your side is no less painful, but ends with HOPE.”   My favorite books:1)  Holding on to Hope by Nancy Guthrie:  My favorite on grieving the loss of a child.2)  God is in the Hard Stuff by Bruce and Stan.  My husband and I used this together for a quick devotional at night.  It is not specifically about grief but about all of the hard things we face in this world.  This book made me realize that everybody is suffering in one way or another.3)  Calm My Anxious Heart by Linda Dillow.  I love this book because it is not about grief but about finding contentment and peace despite your circumstances.

We recently sat down to talk with Dr. Courtney Stephenson, DO, FACOG, one of Fetal Hope’s newest additions to the Medical Advisory Board and Director of the recently opened Charlotte Fetal Care Center in Charlotte, NC, to learn more about her journey and inspiration behind treating fetal syndromes like TTTS.

1.       What made you decide to enter the maternal/fetal medicine field?

I enjoy taking care of women with higher risk pregnancies as they are such a diverse group of patients. You can have difficult to manage issues. It’s like being consultants and internists at the same time. I also like the ultrasound side in being able to diagnose a case or provide assurance that everything is okay, or provide information in treatment options, etc.

2.       What made you decide to learn more about fetoscopic surgery, and specifically that to treat TTTS?

When at NYU, I did quite a bit of fetoscopy and found it interesting to be able to operate on the uterus. Since learning these skills, I felt obligated to broaden these skills in treating conditions like TTTS. Being able to change and help the babies feels miraculous.

3.       What does it feel like being one of the only women in fetoscopic surgery today?

I feel proud for all women, as it’s exciting to have broken that barrier. I am also proud as a mom in showing my kids that women can do the same things as men. I certainly couldn’t have done it without my family and team at Carolinas Medical Center.

4.       Anything you would say to women of childbearing age or who might be planning to conceive?

Focus on a balanced diet and lifestyle. Make sure to see your doctor beforehand to address any preexisting conditions. This allows you to have the best opportunity for good health during conception and formation of the embryo. Also, it’s important for women to know that most fetal syndromes are out of their hands — there aren’t known causes — and many women carry this burden that they did something to cause the condition.

5.       What are your thoughts on organizations like Fetal Hope?

It’s a great resource for families to find objective information from knowledgeable sources. Doctors need to work with the Fetal Hope Foundation as a national outreach and networking resource for bringing the medical communities together.

6.       What are a few of your goals for the new Charlotte Fetal Care Center at Carolinas Medical Center in Charlotte, NC?

My short-term goals are to spread awareness of TTTS and to let the local communities know that we are a resource for treating the condition. We are available and ready to provide support whenever needed. My long-term goal includes growing the laser treatment program for TTTS into a reputable, regional resource for families affected.

7.       Have you treated any cases as of the opening of the Charlotte Fetal Care Center?

We are observing a number of cases right now and some have been treated with amniocentesis. However, we did treat our first case here in early March.

8.       What are some common challenges you face when treating TTTS?

Some challenges that every doctor encounter include location of the placenta, whether it’s anterior (on the stomach wall) or posterior (on the back), maternal breathing motion during the actual procedure, and obviously, fetal movement and the quality of the amniotic fluid.

9.       How do you deal with the pressure often associated with operating on such an intense level when a mother and her baby or babies are involved?

I actually competed nationally as a gymnast until I was 22 years old, so I am very comfortable and familiar with this type of intense pressure. My job requires total focus and attention to detail and I feel very fortunate to have a diligent and committed team at CMC that has a similar work ethic.

Dr. Stephenson, DO, FACOG, joined the CMC Women’s Institute Maternal Fetal Medicine Division in August 2004. She graduated from Fairfield University and received her medical degree from New York College of Osteopathic Medicine. After medical school, Dr. Stephenson completed her residency in New York Methodist Hospital followed by a fellowship in Maternal-Fetal Medicine at New York University School of Medicine. Prior to beginning the fetal therapy program at Charlotte Fetal Care Center, Dr. Stephenson completed an extensive training program at the Fetal Care Center of Cincinnati (FCCC) under the mentorship of world renowned fetal surgeon, Dr. Timothy Crombleholme.

When my fiancé and I went in for our routine 20 week ultrasound, we were ecstatic to find out the sex of our beautiful bundle of joy. Being so naïve at the time, my biggest fear was that the baby wouldn’t be positioned in the technician’s favor and we wouldn’t be able to find out the gender. Boy was I snapped back into reality quickly when the technician brought in the doctor, who told us “there is a major problem with this pregnancy.” Before he explained the problem, he made us vow that we would not go home and type the words we were about to hear into Google, because what we would find would scare us to death. My heart sank as he proceeded to point out our baby’s enlarged bladder. He took us into a consultation room and began explaining that our baby has a diagnosis called PUV (posterior urethra valves). Ultimately, there was little to no amniotic fluid. He told us we had three options. The first was to continue with the pregnancy as is, which would inevitably lead to the death of our baby, whether it was in utero or post birth. The second option was termination, which was the hardest thing we’d ever heard. The third was a long shot, but fetal surgery, depending on whether or not our baby met certain criteria necessary for surgery. We told him we would do anything and everything to save our baby’s life, and thus began a very long journey.

I had three amniocentises done over the next three days, and we sat on pins and needles for the next week, awaiting the results. I had never experienced the kind of uncertainty and pain we were facing every moment of everyday. The results would tell us his gender (it‘s a boy!), his electrolytes level (indicating kidney function), and whether or not there were any chromosome abnormalities. The results came back and he was a candidate for surgery! That was the best news we’d ever gotten in our lives. During that time was when we came upon the Fetal Hope Foundation. Georgi was able to guide us in the right direction with how to proceed, offer immense support, and share her son’s success story with us. Without a doubt, we would have been a lost without what we now refer to as our “LUTO family.”

At 23 weeks pregnant, I flew up to Philadelphia to see Dr. Johnson’s team at Children’s Hospital of

Elijah Lee Hyde was born on November 21, 2009. He was put on the oscillator for ten days, the ventilator for another five, and underwent extensive care in the NICU at CHOP. He had his first surgery for a vesicostomy at 11 days old. We were experiencing some of the most beautiful moments and some of the scariest moments of our lives while he was in the NICU. Sending your newborn baby into surgery was definitely on that list of “Scariest Moments.” Dr. Zderic and his team of urologists found that Elijah’s bladder was in much worse condition than they were hoping. Rather than performing a routine vesicostomy, they resorted to doing a double barrel ureterostomy, which they are hoping gives his bladder an opportunity to restore itself. He was in the hospital for a total of 6 weeks, a much shorter stay than we’d expected.

Today, we’re thankful for Dr. Hill, our doctor at home, who guided us the whole way and was informed enough to know fetal surgery was an option. We’re thankful for Dr. Johnson, Dr. Bebbington, and so many of the other doctors at CHOP, whose motto was “No Fetus Can Defeat Us!” We’re also thankful for the Fetal Hope Foundation. In a time when we felt clueless, hopeless and lost, we found hope and peace through the many others who have experienced fetal distresses. We found Fetal Hope on the day we found out about Elijah’s condition, and have made it a huge part of our lives since. Through Fetal Hope, we have found what we refer to as our “LUTO Family”. Now, we are blessed to have a beautiful, happy four month old who is not easily deterred. All those moments we feared we might never have, we are having now. Pushing our son in his stroller around the park, watching him sleep in his crib, witnessing his first smile, his first laugh are things we will never take for granted. Though our schedules are hectic with constant appointments and incessantly refilling medications, life as parents to a LUTO survivor is beautiful and blessed. 

Ours is a story that needs to be told as it is one of hope and of success, and I have realized during this journey that it is not always a certainty that these kinds of stories close with a happy ending.  Ours does, and my wish is that parents who find themselves searching for answers to the millions of questions running through their minds, and who are in desperate need of a sliver of hope, will find it in reading our story.

Tom and I already had two beautiful, completely healthy children – a boy and a girl.  When we decided to try for just one more child, I wondered if we were tempting fate.  When we found out we were pregnant with spontaneous twins we were surprised but so excited.  When we were told that our twins were suffering from TTTS we were devastated, terrified, and felt completely powerless.

At 12 weeks gestation our twins were the exact same size and weight, and had the exact same heart rate.  At 16 weeks gestation, our ob/gyn in Longmont, Colorado, Dr. Brian Nelson, discovered a significant difference in size among the twins, as well as a tremendous amount of fluid in one baby’s amniotic sac.  It was Dr. Nelson who first realized something was not quite right, and had he not moved forward with such urgency, had he not referred us to a specialist in the field of maternal-fetal medicine, I have no doubt that our story would not have the same happy ending.  We are so blessed to have had such thorough, consistent, and carefully managed care with him.

At 16 weeks and 6 days gestation, we had a very detailed and lengthy ultrasound at University Hospital in Aurora, Colorado where we met the brilliant Dr. Virginia Winn.  During our appointment there we learned that our twins were identical, that they were girls, that they were suffering from TTTS, and that the smaller twin was measuring in less than the 10^th percentile of growth for their gestational age, while the larger twin was measuring in the 60^th percentile.    They had all the telltale signs of TTTS – no visible bladder in our donor twin and a consistently full bladder in our recipient twin, no measurable fluid around the smaller baby and an overabundance of fluid surrounding the larger baby.  There was no mistaking what was going on.

Dr. Winn, who had completed her Residency and Fellowship at the University of CA, San Francisco, was very familiar with TTTs.  She made the diagnosis quickly, and went to work immediately on our behalf to arrange for the fetoscopic laser photocoagulation surgery.  Her recommendation was that, if at all possible, we needed to go to Kirkland, Washington for the procedure.  We had one additional ultrasound at University to measure and hope for ideal fluid levels, and then Tom, myself, and my mom were off to Washington state.  Upon leaving Colorado our twins were in the second stage of TTTS. (We found out later that ironically, we were not supposed to see Dr. Winn that day, but due to scheduling issues, she happened to fill in for our appointment.  She typically does not do much clinical care. Y)

Upon our arrival at Evergreen Hospital Medical Center in Kirkland, WA we underwent an extensive ultrasound.  This was exactly one week after our appointment with Dr. Nelson in Colorado.  We had, in three short days since our last ultrasound in Colorado, moved into stage three of the syndrome and our recipient twin’s heart had begun to suffer so severely that she was actually sicker going into surgery than our donor twin, who was so very small. We were told that there was a 90% chance that they could save one twin, and about a 65% chance that both girls would be okay.

The next morning, Tuesday, January 20^th, the day President O’Bama was inaugurated, we underwent fetoscopic laser photocoagulation with  Dr. Walker and Dr. Paek performing the surgery.  We met our babies on a television screen where the doctors monitored the laser ablation.   We watched as the surgeons carefully identified each and every blood vessel that crossed over the equator of the placenta, which was transfusing the life-giving amniotic fluid from our donor twin to our recipient twin.  Fortunately, we learned that our donor twin’s portion of the placenta was enough to sustain her growth through the remainder of the pregnancy.  Tom held my hand the entire time.  I prayed, as hard as I have ever prayed – a hundred Hail Mary’s?  Maybe a thousand…

The next morning we were met by the incredible staff that had provided such amazing care for us at our hospital room door and we were wheeled down for the follow-up ultrasound.  I’m sure it was only moments, but it felt like hours, even years passing while we waited to hear the most beautiful and relieving words…”Two heartbeats!”  The entire room cheered and clapped, including the nurses and medical staff that had stayed in the room with us while Dr. Walker observed the scan.  His words to us upon leaving were, “I think you are looking at a completely normal twin pregnancy from this point on – as normal as twin pregnancies can be, anyway.”

And…it was. We monitored them very carefully and followed every order that we were given by our doctors.  Toward the end of the pregnancy our donor twin’s portion of the placenta began to struggle to provide for her growth, but otherwise the rest of the pregnancy went very smoothly for the most part.  Our twins arrived at thirty-six weeks and two days gestation (five days prior to our scheduled c-section date), our donor twin weighing in at      3 lbs. 6 oz. and our recipient twin at 5 lbs. 12 oz.  They were small, but they were perfect.  We named them Zea Rose and Zoe Grace.  These were names we had chosen specifically for their meaning just days before leaving for Washington.  We named our donor twin Zea, which means giver of life.  And our recipient twin we named Zoe, which means life.

Even now, 16 weeks after delivery, when I find myself holding them both in my arms, watching them sleep peacefully in their cribs, or when they smile those toothless smiles, it is hard to believe that they both made it, especially when I think back to what we knew was a very bleak diagnosis.  We are a success story.  How?  Why?  We had amazing medical care.  Brilliant doctors worked diligently to save the lives of these babies.  We moved incredibly quickly after our diagnosis and did exactly what people who had lived through the nightmare of TTTS advised us to do in order to save them.  We owe so much to so many for their help, their observations, their diagnosis, the urgency with which they acted, their skill, their knowledge, their expertise, and their determination.

More than anything though, I must thank the hundreds of people who were praying for us from the first moment we found out it was possible that we could lose both of our twins.  So many people reached out to us, reached out to others and asked their friends and families to also pray for our girls…prayers for steady hands, prayers for hope, prayers for strength, prayers for healing - I truly believe that It was through prayer that our girls were saved.

“The most amazing experience in life is to be a parent and one can only truly sense it by becoming one. The first time you lay your eyes on your child you know deep down inside that your life as you know it will revolve around him or her.”

The above text is a lose quote from my father and being a son I always wanted a child of my own, not to revolve around him but to experience life along side with him or her.

My wife and I met like any other typical couple, a love story at college, fell in love, got engaged and right before we were suppose to get married she was hospitalized, not so typical after all!

She was diagnosed with a uterine fibroid and it was a huge one. After myomectomy, it was discovered that the presence of such a huge fibroid made the uterus totally out of shape and the fallopian tubes were blocked. Thus, conceiving a child naturally was out of the question.

We got married, and took a break form doctors. After two years we got the shape of the uterus corrected surgically. The only logical step after that was IVF which my wife endured and tried for 5 cycles in two years but without success. So we vowed to try one last time and the 6th time was a charm.

After anxiously waiting for fifteen days the dreaded home pregnancy test was taken by her which was positive. We were reluctant to celebrate and waited for the blood test result as it is more accurate.

Once the result was in we were quite excited to begin our journey into parenthood.

The next step was an ultrasound to check for the heart beat of the baby. We went in with the excitement and while waiting I kind of had a flash back of all the movies I have seen in which they have shown couples with a surprised expression while the doctors tells them, “oh I am sorry there seems to be something wrong here”, and you just don’t know what to do because all you see is a ten inch monitor with haze all over it and you wonder how the hell can she see anything in it. So naturally, feeling a little pessimistic I cowardly declined to go in and waited outside and after five minutes I heard two screams one was of the doctor and the second was of my wife. I was frankly, terrified.

At that point I was finally called in and as I entered the room I saw the doctor with a huge smile on her face, that kind of spoiled the surprise and I was sure that we are going to be parents now but I was also wondering what the scream was all about, maybe the baby waved or something. Well than there was a third scream and that was me.

The screams were justified because we were shown by the good doctor, in her tiny machine that we are not only pregnant but pregnant with triplets. Now for some folks that would be lucky or God send but for us it was a miracle. Miracle because only two fertilized eggs were transferred into the uterus and to ordinary folk like us two eggs mean two babies. So the screams were warranted.

After loads of smile and thanks to the almighty we were shoved in to the doctor’s office for consultation. Where we were told that we are one of the lucky ones, only few in a million conceive monozygotic twins, with a dizygotic triplet. Well it all probably sounds gibberish but it is really simple. Dizygotic means, when two separate eggs are fertilized by two different sperms, thus fraternal twins. Monozygotic on the other hand is a mystery of science nobody knows for sure how exactly it happens. In short when a fertilized egg splits in two after a certain time it results into identical twins. Well the detail of the things going wrong with this kind of pregnancies are numerous but we were lucky not to have any, though we had one issue which was quite huge, enough for the doctor to be concerned about. He was to determine at a later stage around the 12th week of pregnancy that whether they were monochorionic or dichorionic twins. Monochorionic are a true rarity in nature and have most of the problems. TTTS and SIUGR being the most common and potentially fatal if not treated or rather managed right. We naturally were blessed to have monochorionic twins, thus putting the pregnancy at a greater risk.

The prognosis was that, we were pregnant with two identical twins and a fraternal twin thus triplets. And my wife was on her way to carry not two but three babies.

A lot of people would agree with me, that the task of carrying a baby is intricate, but to carry three in one go is an unexplainable phenomenon which only a mother who goes through a multiple pregnancy can elaborate.

When I asked my wife after a frown, I got this answer. “The strength comes from with in and one becomes strong and stronger as the days go by. You keep on telling your self, GOD gave them to me so he will decide what to do with them” (A direct quote from my wife).

When you are in a situation like this being close to your faith is the only option.

From that point onwards it was a roller coaster ride; the end of every

week was celebrated. We were given goals and some advice. The advice was simple complete bed rest only going to the washroom was allowed (from the beginning) and to eat right (Loads of liquid and high protein intake was stressed). The goal was to pass 22nd week to reach first base (viable age for delivery) second was to reach 26th week third was 28th and the 33rd week was considered to be the home run.

Well, I being a football guy myself found the whole process to be treacherously slow.

We were told to look for different markers in the ultrasounds, which was advised every 2nd week.  At that point my best friend became google. Although it took a lot of research and a lot of hours of reading but I finally understood what was going on. Also at that time I was fortunate enough to find a website by the name of “fetalhope.org”. It had all the answers that I could come up with but I needed some assurance so I wrote to them and I got the reply from them in hours. That was the first time I exchanged emails from Lonnie Somers. His words were like a therapy to my wife and I. He assured us that we are not alone and that we must be strong. He was with us till the end and his kind emails got us through the whole experience with the glimmer of hope.

At the 18th week marker we were told by the doctor that the nuclatranslucansy of one of the identical twins is not right and it is just on the borderline. That in short means that if it does not improve the baby might be born with Down syndrome. Well the news was disheartening but we both kept our faith. I was some what confident that it would be normal at a later stage since in my research I have read couple of articles suggesting that it usually normalizes at the 22nd week marker. At the 21st week marker it was absolutely normal.

Than till the 28th week everything was fine and on the routine check up doctor discovered that mild IUGR is developing in one of the identical twins. IUGR is a growth restriction in the uterus, since the identical twins share the same living space they also share the same source for food in this case the same placenta. IUGR is a condition when the nutrient supply to one of the baby is insufficient resulting in poor growth of the effected baby.  IUGR this late in this pregnancy is some what typical but it can be very dangerous at anytime so constant monitoring was necessary. That means twice a week check up.

Then we crossed the physiological barrier of 30 weeks. That would mean that if babies are born now they have a very good chance of survival and that all the major developments are done. From this point onwards they just need to gain weight. Around this point my wife was advised hospitalization because it was now necessary for her to be monitored along with all three babies. Finally at exactly 32nd week of pregnancy, my wife gave birth to triplets.

We were blessed to have two identical sons and a beautiful daughter.

Now the real test started, all that had happened since the beginning seemed like a walk in the park. At first they never allowed me inside the operation room since it was a risky affair and they had 5 doctors and 15 people assisting them and they never wanted a distraction, which could have been me.

So after 55 agonizing minutes I was made aware by the head doctor that everything went beautifully and that all three babies are fine and the mother is doing great. At that point I was anxiously waiting to see them all and requested to do so but I was told the babies have already been shifted to NICU and the wife is in the recovery room and that it will be a while before I can see them. So after 2 hours of drama I finally saw my wife and after that I saw my babies.

No words can explain and justify what we both went through. When I look back it was an experience which can not be explained. As I entered the NICU I was first met with the team of doctors who helped delivered the babies. There were three teams consisting of three doctors each, one team for every baby. They took turns explaining me what can go wrong with each baby and what challenges they face. The main concern or goal was that the babies don’t catch any infections and that they gain weight. In short the next 24 hours were crucial.

There concern was valid since the birth weight of all the babies was some what low. The birth weight for two babies was 1800gms and 1100gms for the baby boy who had IUGR.

Than after 40 minutes of explaining and assurances I was finally asked if I would like to see the babies.

Finally I got the chance to see my babies. The sight was not pretty they were hooked to different monitors and I.V lines. But they all looked beautiful to me those tiny hands and legs were slowly kicking, they all seemed just as restless as they were in there mothers tummy.

I felt so helpless but I composed my self and asked to see the head of the neonatal department. The doctor was an exceptional human being he sat with me as long as I wanted him there he explained that first and foremost my babies are doing great none of them needed oxygen to support there lungs which is a great sign. And he will release them one by one into the mother’s care after 24 hours. But for the baby who was 1100gms he said though he is fine he would require staying in NICU for 2 weeks, it is a protocol they follow for his weight range.

They next few days were tough the mother was in pain emotionally and physically. I had no clue what to do as of now we hadn’t even touched the babies. Than after 30 hours of birth I finally held my baby girl in my hands. And after 12 hours of that, my son was in my arms. They were a little week and looked tiny compared to full term babies and had a feeding tube inserted in there mouth, since they were not strong enough to suck milk on there own. At this point we opted to stay in the hospital because I wanted my wife to recuperate since she could not have rested at home. Also we wanted to take all three babies home together. Finally after two weeks, with the doctor’s permission, the third baby was released from the NICU. We were eventually on our way home.

Home coming was kind of weird no guests were allowed near the babies because of the infection fear. We hired a professional nurse for a month to train us. I took three months off of work, and we started our journey of parenthood.

It was scary at first. Taking care of three little babies was a task, but our doctor was very supportive. It took us couple of weeks to get a hang of it than it became a habit. Changing nappies became easy and feeding got easier after the removal of tubes in about 15 days.

Changing baby clothes were no longer a challenge and the fear of giving them a bath was overcome by my wife as I was too scared to even be in the bathroom.

It took the babies exactly 2 months from birth to show some improvements and at 3 month marker they looked quite healthy. And after 4 months my baby boy who was 1100gms beat his sister in weight.

And now after 7 months when I look back, I just can’t believe we have come so far. All three babies are in exceptional health, there weight and height are at par to any other baby of there age.

Our advice to anyone who is in similar situation to ours is; have faith and maintain a positive attitude it really helps. We were told from the time we discovered we have triplets that we have a very low chance of success. But we are living proof that miracles do happen if you keep faith. I firmly believe no matter what faith you follow having conviction is the only thing which keeps you going.

I would like to conclude by saying that if you ever face a related condition please make sure you get these four things absolutely correct. First, always plan for a delivery in a well equipped hospital with a record of handling similar cases. Second, Get a Doctor who specializes in high risk pregnancies. Third, get the services of a fetal medicinal doctor, it is absolutely essential. Last, Neonatal Doctor should be highly qualified and he or she should be experienced in premature babies. My wife and I were extremely lucky to have gotten all these things right, which in my opinion helped the pregnancy in a big way.

We learned at about 7.5 weeks that we were pregnant with twins, but that they (doctors) did not see a membrane separating the two babies.  Having had two very easy singleton pregnancies before, I had no idea that two babies could even be in the same sack.  We were referred to a specialist and were told that we should wait at least 12 weeks to allow for a membrane to present itself.  So we went for weekly ultrasound appointments and were lucky enough to see a separating membrane at 9 weeks gestation.  This was a good sign.  However, we quickly learned that the babies shared a placenta and that our babies could develop TTTS at any point within the pregnancy.  At 12 weeks the nuchal folds between the two babies were significantly different, Baby A was 3.2 and Baby B was 1.2.  We were told that since they were identical twins more than likely there was not a chromosomal issue, but it could be an indicator of congenital heart problems in Baby A.  Since we already had a 4 year old and a 2 year old, we decided to get a CVS done to allow us to better understand what we may be dealing with.  To complicate things more, I had a low Pap-A, which my doctor said he had never seen to this point in his career in a mom of twins.  I was put on baby aspirin to help that situation.  We had weekly doctor appointments with the specialist and at least bi-weekly doctor appointments with my OB.  We just did not want to make any life or death decisions, we wanted God to handle every decision along the way and we were at peace as long as that could happen.  During our weekly visits, our specialist, Dr. Sabin, was very concerned since Baby B had very low amniotic fluid as compared to Baby A.  We closely monitored this situation.  At about 12 weeks, I had my first conversation with Lonnie and he provided me with a ton of practical information.  He was able to give me statistical information, emotional support, explanations to ALL of my questions as well as medical contacts.  I went ahead and talked to some nurses and doctors who specialize in the laser surgery to help correct TTTS just in case that is a situation we would be faced with.  All of them said it was so early and that time would tell what, if anything, we had to be concerned about.  By about 15 weeks, my specialist, Dr. Sabin was extremely worried and told us that we needed to see one of the highly specialized doctors that deal with the TTTS laser surgery.  We decided to see Dr. Quintero in Florida.  So, within about 5 days, the arrangements had been made for us to fly out to Florida.  I had my parents fly in from southern California to stay with our other two kids while we fought for the lives of our two baby girls (we had learned the sexes through the CVS procedure).  And that is what we were doing since they had no voice of their own as of yet.  We contacted our church, Cherry Hills Community Church, and a group began praying immediately for our situation.  They prayed BOLDLY for both babies to be fine. After a very long flight, we went to See Dr. Quintero in Tampa and after a 2 hour ultrasound, and a 2 hour wait, he met with us to discuss the results.  He was very pleased at what he saw and thought that the babies looked pretty good, despite that the fluid around Baby A was about 7 and Baby B was just under 3.  He did find that Baby B had a velamenous cord insertion which may explain why she was a bit smaller and had less fluid.  Over the next 10 weeks we saw Dr. Sabin weekly and Dr. Dorr bi-weekly.  At about 20-22 weeks they could see that the heart looked great.  Each week the fluid levels hovered around 4 and 5 for Baby B and A respectively, each week improving or staying the same which was a good sign.  The babies were doing good as compared to the singleton growth curve.  Mind you, each week I would leave the doctor feeling hopeful that I got to be pregnant with them for another day and hopefully another week.  The feeling would last a couple of days and then fear would set in and a call to Lonnie would ease just about everything.  I counted each day as I hit the big time markers, first 24 weeks, then 28, then 30, 32, 34 and 35, knowing each week would allow for them to grow and thrive.  We met at week 35 and both of my doctors decided that we would have a c-section at 36 weeks and 2 days since Baby B was breach and had a velamenous cord.  At 35 weeks and 4 days, during a routine check-up, Dr. Sabin thought that Baby A might be getting anemic and that I should go to the hospital for observation since they were showing signs of late TTTS onset (their sizes started to drift apart as well).  Perhaps due to the stress, I began to have contractions and somewhere around 5-7 pm they checked and I was 5 cm dilated.  Change of plans, c-section would be tonight.  But, I was warned that Baby A might need a blood transfusion and had to sign papers prior to delivery.  At 9:37 Baby A, Kennedy Grace was born and Dr. Dorr and Watson sang Happy Birthday.  At 9:39pm, Baby B, Kate Taylor was born and they again sang Happy Birthday.  Both babies were fine and Kennedy did not need a blood transfusion, thank goodness.  They had intermittent oxygen over the next few hours and came to stay with me on the well-baby floor of Littleton Hospital for the next 5 days until we were all released to go home to our now big family.  Kennedy weighed 6 lbs 1 oz., and Kate weighed 4 lbs 15 oz.   If I only relied on the internet for information, I am not sure that I could have endured the situation. As stressful as the situation was, it would have been unbearable without the encouragement of Lonnie and his wife.  At that point in time, they were the only ones who we felt really understood what we were going through both situationally and emotionally.  At 25 weeks pregnant, I watched as my husband ran the TTTS Fetal Hope Race as he pushed our then 4 year old daughter.  I hope and prayed that the following year I would be pushing a stroller with two baby girls right next to him.  God has blessed us richly and this year my 5 year old will ride her bike, my husband will push our 3 year old in a stroller and I will run with Kate and Kennedy. I have to say the most unfortunate and brave thing in all of this is that after the birth of our twins is that I went to thank Dr. Sabin and her team in person for all of their help and learned that Dr. Sabin had been suffering from intestinal cancer.  She has since recently passed away.  Here she gave our babies life while fighting for her own and never, ever letting that get in the way of saving our daughters. I am thankful for the fact that our doctors had the resources to guide us to make educated, well-thought out decisions based on scientific data.  It is so important in the midst of all the emotions to have solid information and a support structure in place.  This is why I will be running the TTTS race in 2009 and every year thereafter.

2^nd Pregnancy

Our first child, Veronica, was born in 2006 in Charlotte, NC.  We loved being a family, and a year later decided we wanted another child.  After a couple months of trying to conceive our second child, we were excited to receive a positive pregnancy result on our home pregnancy test.  A couple of days later we went into our OBGYN and they confirmed the pregnancy.  We fully expected this pregnancy to be as straight forward as our first.  Boy, were we wrong!  At our 8 week check-up, our OBGYN nurse was able to hear a heartbeat!  She told us about a new NT (nuchal translucency) test that required us to see a perinatologist with high definition ultrasound equipment.

Twins!

Upon arriving at the perinatologist for the NT test at our 11 week mark, we were nervous.  Katherine had a feeling that this pregnancy was different than her first, and that something may be wrong with our baby.  The ultrasound technician brought us into the room and asked us her standard questions.  Number of pregnancies?  Any miscarriages?  Any health issues?  Number of fetuses?  That question caught us off-guard.  What do you mean, how many fetuses, of course our answer was “Only 1”.  She then started the ultrasound, and as soon as she put the wand on Katherine’s belly, her face went white!  There they were, clear as day on the screen, two little heads side by side!  We sat there numb as the technician labeled our babies, Baby A and Baby B.

Meeting the Specialists

After a few minutes to gather our emotions over the shock of being pregnant with twins, Dr. Shaver, of Presbyterian Maternal Fetal Medicine, entered the room.  He congratulated us on our exciting news, but felt it was his obligation to warn us of the possible complications that can come with a pregnancy of identical twins.  They knew we had identical twins because there was one placenta and two amniotic sacs.  As best as he could, without causing too much panic in us, Dr Shaver outlined what potentially could happen during this pregnancy.  One of the things he mentioned was a diseased called Twin-to-Twin Transfusion Syndrome.  He said that it only occurs in about 15% of identical twins, but that he would watch our pregnancy closely to make sure our babies were OK.

On top of being told we were expecting twins, Dr Shaver informed us the NT test results weren’t where they should be and we had a 1 in 200 chance of having Down’s Syndrome. Yearning to know more information, we agreed to have a CVS (chorionic villus sampling) test performed.  This test would tell us for certain the genetic makeup of our children, including the sex of the twins.  Dr Shaver would perform the CVS procedure at our 12 week mark.  The next 48 hours were agonizing as we awaited the test results.

Good News

Phil had to leave the country on business which made the wait even more difficult.  Katherine finally received the call with the news we had been hoping for.  Our GIRLS were genetically normal!  Dr Shaver asked to see us back in his office at our 15^th week mark.

TTTS Diagnosis

It wasn’t long into our 15^th week ultrasound that we knew something was wrong.  This time, one of Dr Shaver’s partners was the doctor on duty.  The ultrasound tech asked Dr Imseis to come in to verify what she was seeing.  Baby A was surrounded by a large amount of fluid, and Baby B hardly had any.  Baby A was also showing signs of fluid build-up around her heart and Baby B was showing signs of renal failure.  Dr Imseis immediately suspected we had TTTS.  He left the room to make some phone calls and returned with Dr Shaver to inform us of our choices of treatment.  Due to the severity of the situation, both doctors thought we should visit Dr Quintero at the University of South Florida in Tampa.  We were told that Dr Quintero was the world renowned surgeon who had pioneered the surgical treatment of TTTS.  We immediately booked flights to get us to Tampa within a day.

Dr Quintero

We first met Dr Quintero and his team first thing on a Monday morning.  We were terrified, but they could not have been any nicer to us.  He and his staff were very warm and comforting.  Dr Quintero took one look at our girls on ultrasound and confirmed that we indeed had TTTS.  During the ultrasound, he noticed Baby A was starting to go into heart failure, so he made us an appointment in Clearwater to see a pediatric cardiologist later that afternoon.  The cardiologist confirmed the severity of Baby A’s condition and with that news, Dr Quintero bumped us up to be his first surgery Tuesday morning.  Bright and early on Tuesday we were at the hospital and Katherine was taken into surgery.  Dr Quintero was happy with the procedure, but warned us he wouldn’t know the real outcome until his ultrasound the next day.

After a grueling day Tuesday and a sleepless night, we met Dr Quintero Wednesday morning for our follow-up ultrasound.  Finally, some good news!  After what had been a world wind week, we broke down in tears when Dr Quintero told us that both babies had survived the surgery and were already showing signs of improvement.

Life After Surgery

We returned home to Charlotte after a few days of rest in Tampa knowing that Dr Quintero had told us it would be at least another five weeks before we truly knew if the surgery had been a complete success or not.  Dr Shaver and his team continued to monitor us weekly via ultrasound.  We also were referred to a pediatric cardiologist, Dr Craig Greene, who would routinely evaluate Baby A’s heart condition.  Although the weekly visits to the doctors were draining it was encouraging to see the progress our girls were making and watching them grow and get healthy made it all worthwhile.

28 Weeks

Katherine started to have contractions and went into preterm labor.  She was admitted to the hospital and the doctors were able to prevent delivery thought a cocktail of drugs including Magnesium.  She was sent home a week later on strict bed-rest with at-home monitoring and would continue medications to keep our precious girls inside until 34 weeks.

Caroline and Aubrey

We welcomed Caroline (Baby A) and Aubrey (Baby B) into the world on April 7, 2008.  The delivery team was prepared for potential emergency heart surgery on Caroline, but we were blessed to find out that she was doing much better than expected.  The girls spent a little over 3 weeks in the NICU, and even though they suffered a few minor setbacks, they continued to grow and get healthy.  Three and a half weeks after their birth, we finally had our family of five at home, together under one roof!

With love and compassion, and dedicated occupational and physical therapists, our little miracles have grown into rambunctious toddlers who continue to amaze us every single day.  They have received a clean bill of health from their doctors, and if we didn’t tell you, you would never know the fight they have fought to be here today!

We love you girls – Mommy and Daddy (Katherine and Phil)

May 10, 2008…that was the day we found out we were having twins.  One would expect the doctor to share the news by using an excited tone “WOW….there are two”.  But instead, the conversation went more like, “oh there are two, don’t go online and look up twin complications”.  We were confused.  The doctor shared she was worried that there was no sac separating the girls.

We were followed by a perinatologist shortly afterwards, Dr. Librizzi.  At week 11, the doctors were relieved.  We were told we had mono-di twins, which meant the girls were separated by a sac.  We overcame the beginning of never ending obstacles.

At week fifteen, our perinatologist, became concerned again. Sophia was not growing as quickly as Kaitlyn and the fluid in her sac was low.  He was concerned that I had Twin to Twin Transfusion Syndrome.   He had talked to us about this specialist in Tampa that performed what he called fetal ablation surgery or laser surgery.  It was such a coincidence that we happened to be leaving for Florida in a few days.  Dr. Librizzi fought to have us seen in Tampa by one of the pioneers in this specific surgery. 

We flew into Tampa for the appointment July 1st 2008.   A two hour ultrasound was performed and we waited patiently for the results.   We were told the doctor we would be meeting was a “happy, bubbly guy“. When the doctor walked in, we did not see a smile on his face.  Panic went through our bodies.  We were told we had TTTS stage 2.  There are five stages of TTTS.  The doctor, Rueben Quintero,  was also concerned that Sophia was encountering “IUGR - intrauterine growth restriction.“ The pregnancy was getting progressively worse and we were told we can go on our way and enjoy our vacation, but the girls might not survive a week.  We were a candidate for the fetal ablations surgery and set the appointment up for two days later to have the grandparents come out.

The surgery lasted 45 minutes and the doctor was very pleased.  We were told three major blood vessels were closed by a laser to separate the girls.   The next day, we had to wait anxiously to see if both girls survived the surgery.  We were told, “TWO HEART BEATS.”  We were so happy.  We overcame another major obstacle. 

The pregnancy appeared to go well the next two months.  Dr. Librizzi was pleased that Sophia was growing.  At 27 weeks, we were told the girls needed to be delivered due to concerns with my health, preeclampsia and because of Sophia’s health.  Sophia’s Doppler ratings were high.  It was not the news we wanted to hear. 

On September 18, 2008, Kaitlyn was the first to come in the world.  She was crying - a wonderful sound to hear.  Then Sophia came.  She was not crying, but breathing.  Her eyes were wide open.  She appeared calm and curious.

Kaitlyn did remarkably well.  She was born weighing two pounds three ounces.  She did not have any setbacks and was out of the hospital in two months one week.  Sophia  had many battles to overcome.

From the beginning, Sophia showed such personality.  She was a feisty little girl.  She did not like the ventilator in her throat and there were times, she pulled it out.  She loved her care and would help out, by sticking her butt in the air to get cleaned.  She also loved her Kangaroo care, in which she would be skin to skin with her parents. 

For the first couple months, Sophia had to fight off several infections.  She also had to undergo patent abductus surgery. She was such a fighter and quickly pulled through the surgery.  Monday, November 17, 2008, Sophia became very sick and her belly was very red and enlarged.  We were told she could have something called NEC, necrotizing entercolitis.  We were again in panic mode. NEC…what the heck is NEC?  We spent the night online.  We were so confused, because most of the information we read, babies developed NEC early on…not at two months old. We learned NEC was when the intestines begin to die, due to bacteria. 

The next day, the doctors became very, very concerned. A specialist looked at her, but was not available to do surgery, if her intestine was to perforate.    We were given the option to transfer her to CHOP or wait for the surgeon to be available the next day.  Dave made the decision to transfer her to CHOP in spite of the dangers.

That night, when she arrived at CHOP the surgeon agreed she needed surgery. We tried to sleep at the hospital waiting for Sophia to be finished.  At 1 am, we received a knock at the door in our sleep quarters. It was the surgeon. She told us that things looked very promising.  She said that her intestines were in terrible shape, but she believed they would recover.  A sense of relief went through our bodies. Sophia had been so swollen from the NEC, she was not able to be closed up right away and receive surgery a week later to be closed up.  She also received an ostomy bag to give her intestines a break.

It was a rough month, watching her recover.  Sophia had blown up like a balloon and looked to be in such pain. It broke our hears. She also had to have eye surgery during this time due to retinopathy of prematurity.  Week by week, she started to look herself again. 

In January 2009, Sophia was finally placed in a crib.  It was such an exciting day for us.  Sophia did amazing the next few months.  These were the most special months for us.  She was doing such amazing things, given what she had been through.

We noticed a resemblance to her identical twin sister, Kaitlyn.  The girls were able to meet face to face and touch each other.  Sophia, ever curious was often fixated on her sister.  Sophia loved to be around others and when given any attention, she was so content.  In her pictures, she was always looking lovingly at the person holding her, not so much at the camera. 

Sophia was such a social baby.  The nurses at CHOP learned that  Sophia loved to watch them and they would put her in the middle of the unit so she could watch the nurses work.  During rounds, she was always awake.  The doctors and nurses would tell Dave and me, Sophia has to be listening.  The nurses would prop her up on a boppy so that she could get a better view of everyone talking about her.

When Sophia was left alone at her crib, she learned to get the attention of the nurses by crying.  The minute she had attention, her tears were gone.  She loved to be held and you could see her melt in her families and the nurses’ arms

During the time at the NICU, Sophia also was able to participate in different activities.  One activity she loved was music therapy.  Kaitlyn would also join her. The two girls were so mesmerized by the lady with the guitar and you could see the smiles in both their faces.

The excitement and joy grew in our hearts as we imagined the changes our lives would undergo.  We were told Sophia would be home in March and had Dave and I were required to take classes to prepare for her venture home. But as it happened so many times before, Sophia faced another hurdle.  She could not reach her full feeds and needed surgery to be reattached.   In mid March, she had surgery again to be reattached. During the surgery, the surgeon  noticed the NEC had come back and Sophia faced more complications than expected.  Dr. Collins, the surgeon, had to remove a good deal of Sophia’s intestines to get rid of the infected parts. 

After this surgery, the long healing process had to begin again.  Sophia was swollen from the edema and in great pain, but as time went by, she got stronger and looked better.  She got back on her nasal canula and slowly put on some weight, but still had some obstacles.  Sophia began to develop these unexplained Brady spells which caused her heart rate to slow dramatically and her oxygen levels to drop.  The doctors were concerned, but thought it was “reflux“. Sophia was given an ND tube and put back on the ventilator to give her better airflow and to  prevent any significant  brady spells.  Times were starting to get good again.  We could hold our baby and kiss her.  Melissa often sang to her. 

On Monday, April 26, Melissa met with the head doctor, who told her Sophia would be home in June.  He talked about the steps needed for Sophia to come home. That night Sophia had a “code blue” - the beginning of many.  The doctor feared she had “pulmonary hypertension“.  This was confirmed the next day.  Sophia started to respond to the typical treatment, but that did not last long.  The doctors thought they had lost her at one point as Dave and I frantically drove to CHOP to get there before she passed.   She pulled through, to spend her last moments with her family.

The doctor realized there was nothing left medically to do for Sophia and wanted us to spend her last moments with her, without the monitors and wires.  We were able to bathe and dress her.  We held her in our arms and kissed her and told her how much we loved her.  We also let her know how blessed we were to have 7 ½ months with her. 

What a brave little girl Sophia was….She had been through so much.  She was a fighter…She fought to have time with us.  Dave and I held her in our arms, as Sophia left the earth.

May 10, 2008…that was the day we found out we were having twins.  One would expect the doctor to share the news by using an excited tone “WOW….there are two”.  But instead, the conversation went more like, “oh there are two, don’t go online and look up twin complications”.  We were confused.  The doctor shared she was worried that there was no sac separating the girls.

We were followed by a perinatologist shortly afterwards, Dr. Librizzi.  At week 11, the doctors were relieved.  We were told we had mono-di twins, which meant the girls were separated by a sac.  We overcame the beginning of never ending obstacles.

At week fifteen, our perinatologist, became concerned again. Sophia was not growing as quickly as Kaitlyn and the fluid in her sac was low.  He was concerned that I had Twin to Twin Transfusion Syndrome.   He had talked to us about this specialist in Tampa that performed what he called fetal ablation surgery or laser surgery.  It was such a coincidence that we happened to be leaving for Florida in a few days.  Dr. Librizzi fought to have us seen in Tampa by one of the pioneers in this specific surgery. 

We flew into Tampa for the appointment July 1st 2008.   A two hour ultrasound was performed and we waited patiently for the results.   We were told the doctor we would be meeting was a “happy, bubbly guy“. When the doctor walked in, we did not see a smile on his face.  Panic went through our bodies.  We were told we had TTTS stage 2.  There are five stages of TTTS.  The doctor, Rueben Quintero,  was also concerned that Sophia was encountering “IUGR - intrauterine growth restriction.“ The pregnancy was getting progressively worse and we were told we can go on our way and enjoy our vacation, but the girls might not survive a week.  We were a candidate for the fetal ablations surgery and set the appointment up for two days later to have the grandparents come out.

The surgery lasted 45 minutes and the doctor was very pleased.  We were told three major blood vessels were closed by a laser to separate the girls.   The next day, we had to wait anxiously to see if both girls survived the surgery.  We were told, “TWO HEART BEATS.”  We were so happy.  We overcame another major obstacle. 

The pregnancy appeared to go well the next two months.  Dr. Librizzi was pleased that Sophia was growing.  At 27 weeks, we were told the girls needed to be delivered due to concerns with my health, preeclampsia and because of Sophia’s health.  Sophia’s Doppler ratings were high.  It was not the news we wanted to hear. 

On September 18, 2008, Kaitlyn was the first to come in the world.  She was crying - a wonderful sound to hear.  Then Sophia came.  She was not crying, but breathing.  Her eyes were wide open.  She appeared calm and curious.

Kaitlyn did remarkably well.  She was born weighing two pounds three ounces.  She did not have any setbacks and was out of the hospital in two months one week.  Sophia  had many battles to overcome.

From the beginning, Sophia showed such personality.  She was a feisty little girl.  She did not like the ventilator in her throat and there were times, she pulled it out.  She loved her care and would help out, by sticking her butt in the air to get cleaned.  She also loved her Kangaroo care, in which she would be skin to skin with her parents. 

For the first couple months, Sophia had to fight off several infections.  She also had to undergo patent abductus surgery. She was such a fighter and quickly pulled through the surgery.  Monday, November 17, 2008, Sophia became very sick and her belly was very red and enlarged.  We were told she could have something called NEC, necrotizing entercolitis.  We were again in panic mode. NEC…what the heck is NEC?  We spent the night online.  We were so confused, because most of the information we read, babies developed NEC early on…not at two months old. We learned NEC was when the intestines begin to die, due to bacteria. 

The next day, the doctors became very, very concerned. A specialist looked at her, but was not available to do surgery, if her intestine was to perforate.    We were given the option to transfer her to CHOP or wait for the surgeon to be available the next day.  Dave made the decision to transfer her to CHOP in spite of the dangers.

That night, when she arrived at CHOP the surgeon agreed she needed surgery. We tried to sleep at the hospital waiting for Sophia to be finished.  At 1 am, we received a knock at the door in our sleep quarters. It was the surgeon. She told us that things looked very promising.  She said that her intestines were in terrible shape, but she believed they would recover.  A sense of relief went through our bodies. Sophia had been so swollen from the NEC, she was not able to be closed up right away and receive surgery a week later to be closed up.  She also received an ostomy bag to give her intestines a break.

It was a rough month, watching her recover.  Sophia had blown up like a balloon and looked to be in such pain. It broke our hears. She also had to have eye surgery during this time due to retinopathy of prematurity.  Week by week, she started to look herself again. 

In January 2009, Sophia was finally placed in a crib.  It was such an exciting day for us.  Sophia did amazing the next few months.  These were the most special months for us.  She was doing such amazing things, given what she had been through.

We noticed a resemblance to her identical twin sister, Kaitlyn.  The girls were able to meet face to face and touch each other.  Sophia, ever curious was often fixated on her sister.  Sophia loved to be around others and when given any attention, she was so content.  In her pictures, she was always looking lovingly at the person holding her, not so much at the camera. 

Sophia was such a social baby.  The nurses at CHOP learned that  Sophia loved to watch them and they would put her in the middle of the unit so she could watch the nurses work.  During rounds, she was always awake.  The doctors and nurses would tell Dave and me, Sophia has to be listening.  The nurses would prop her up on a boppy so that she could get a better view of everyone talking about her.

When Sophia was left alone at her crib, she learned to get the attention of the nurses by crying.  The minute she had attention, her tears were gone.  She loved to be held and you could see her melt in her families and the nurses’ arms

During the time at the NICU, Sophia also was able to participate in different activities.  One activity she loved was music therapy.  Kaitlyn would also join her. The two girls were so mesmerized by the lady with the guitar and you could see the smiles in both their faces.

The excitement and joy grew in our hearts as we imagined the changes our lives would undergo.  We were told Sophia would be home in March and had Dave and I were required to take classes to prepare for her venture home. But as it happened so many times before, Sophia faced another hurdle.  She could not reach her full feeds and needed surgery to be reattached.   In mid March, she had surgery again to be reattached. During the surgery, the surgeon  noticed the NEC had come back and Sophia faced more complications than expected.  Dr. Collins, the surgeon, had to remove a good deal of Sophia’s intestines to get rid of the infected parts. 

After this surgery, the long healing process had to begin again.  Sophia was swollen from the edema and in great pain, but as time went by, she got stronger and looked better.  She got back on her nasal canula and slowly put on some weight, but still had some obstacles.  Sophia began to develop these unexplained Brady spells which caused her heart rate to slow dramatically and her oxygen levels to drop.  The doctors were concerned, but thought it was “reflux“. Sophia was given an ND tube and put back on the ventilator to give her better airflow and to  prevent any significant  brady spells.  Times were starting to get good again.  We could hold our baby and kiss her.  Melissa often sang to her. 

On Monday, April 26, Melissa met with the head doctor, who told her Sophia would be home in June.  He talked about the steps needed for Sophia to come home. That night Sophia had a “code blue” - the beginning of many.  The doctor feared she had “pulmonary hypertension“.  This was confirmed the next day.  Sophia started to respond to the typical treatment, but that did not last long.  The doctors thought they had lost her at one point as Dave and I frantically drove to CHOP to get there before she passed.   She pulled through, to spend her last moments with her family.

The doctor realized there was nothing left medically to do for Sophia and wanted us to spend her last moments with her, without the monitors and wires.  We were able to bathe and dress her.  We held her in our arms and kissed her and told her how much we loved her.  We also let her know how blessed we were to have 7 ½ months with her. 

What a brave little girl Sophia was….She had been through so much.  She was a fighter…She fought to have time with us.  Dave and I held her in our arms, as Sophia left the earth.

Cinderella, Snow White, Sleeping Beauty – the list goes on and on. We have all read most of the more popular fairy tales.  Some of us have them memorized after having read them a thousand times.  Well, we were living the fairytale until we were introduced to something we had never heard of before, Twin to Twin Transfusion Syndrome or TTTS.  Our story is not a typical fairy tale.  It is one that has a great deal of heart ache and a great deal of sadness, but it is one that proves love, faith and family can get you through just about anything.

Our story really starts in the summer of 2004.  My wife, Connie, and I were blessed with a son, Noah, who tragically died of NEC on the day that we were supposed to bring him home from the NICU.  We struggled with the loss, but knew that we wanted to have more children. We were once again blessed and became pregnant very soon after our loss.  You can imagine our excitement but also the apprehensiveness.  We did not want to take any chances this time, so we decided to go to a high risk pregnancy clinic right away.  We went in for our first ultrasound pretty early.  I remember the lab technician looking strangely at the monitor and eventually she asked, “Do twins run in the family?”.  Connie and I just laughed.  It was not a surprise.  After all, I am an identical twin and my wife has twins in her family.  It all seemed normal, and we were very excited.

Things were going great!  We went in for our 18 week check up, and again, we were sent into a tailspin.  The doctors were very concerned, and they told us that our girls had TTTS.  We did not know what that meant, but we knew we would do whatever it would take to save our girls.  Within a week, we were on a plane to Tampa, Florida to have fetal surgery.  When we got there, it was obvious that Dr. Quintero sensed how critical they were and knew it had to be done that night. He called his team back to the hospital to do the emergency surgery. We were in that land of helplessness again.  I cannot explain it.  If you have been there, you know that it is not a pleasant place.  We knew we could lose one or both of our girls, but that we had to do something.  The only thing we could think about was hearing two heartbeats at the next ultrasound. I think that sound will forever be embedded in our hearts.  The second day after the surgery things seemed to be getting better.  We flew home and the pregnancy went well until 32 weeks.  Maya and Jadyn were born at 32 weeks 2 days.  We were blessed with two healthy little girls. Of course with premature birth, they had their issues, but we made it through with the help of our families.

Speaking of family, this is where our story gets a little complicated.  As we struggled through the first year or so of Maya and Jadyn’s lives, my twin brother and his wife announced to the family that they were expecting as well.  We were so excited for them; they had been trying for so long and finally it was their turn.  Of course, they had a little surprise for all of us.   

My wife, Melissa, and I (Mark’s identical twin) had finally been blessed with a pregnancy that surpassed all of our expectations, we were having triplets!  We had spent years trying to have children which included going to fertility clinics and at least one confirmed miscarriage.  We were extremely lucky to have family to support us in our pregnancy; we immediately knew which clinics to go to, what questions to ask, and we had plenty of helping hands on the way.  However, we also knew more about high risk pregnancies and fetal distresses and syndromes because of Connie and Mark’s experiences. 

Things were moving along quickly as we planned for three little bundles of joy.  We knew that once the triplets were born there would be very little time for anything other than diaper changes, feedings, cleaning up and cuddling with our precious little miracles.  Melissa faced numerous challenges along the way due to the stresses of carrying triplets and was put on bed rest at 18 weeks.  The triplets were doing well and things were progressing right on schedule, we were so excited! However, in the back of our minds, we were nervously counting the weeks, as we knew the inherent risks of multiple births. 

At 19 weeks, the wheels fell off our joy ride!  Aidan and Gavin, our identical twins, were diagnosed with TTTS.  We were horrified because we knew the statistics and the possible outcomes.  However, we also knew what needed to be done and which doctor to go to for the surgery. Within the week, we were on our way to Florida to see Dr. Quintero’s team for the laser surgery.  After the initial meetings and scans, Dr. Quintero decided the surgery must be done immediately and his team was called back to the hospital.  The procedure went well, so off to recovery for Melissa and the boys.  Minutes seemed like hours as we anxiously waited for the morning. After a few tests and scans, we received the news that our little Gavin who was very sick did not make it through the night.  We were traumatized by the loss, but doctors stressed that our focus must be directed to the survival of Aidan and Ethan our remaining twins.

We flew home with heart ache as we had lost one of our little boys.  Things were very uneventful until about 11 weeks later when Aidan and Ethan were born at 31 weeks.  After some time in the NICU, our little boys have grown into rambunctious, little two year olds.  We will always struggle watching Aidan grow up without Gavin by his side; however, we know that he will always live on in our hearts.

Life is filled with things that we do not understand.  Sometimes they bring great joy and sometimes they bring unbearable heartache.  Sleeping beauty awakes from her sleep with a kiss from her true love, Cinderella finds true love with the help of her fairy godmother, and we have been blessed with the love of our twins.  Our lives have been forever changed because of TTTS, and there is a special place in our hearts for Dr. Quintero and his team for the miracles they perform.

Harris Family

Within that past couple of years my husband and I have experienced four miscarriages.  The loss of a child, no matter at what stage, is heartbreaking.  Doctors told us after each miscarriage that there is nothing wrong with us, we are still young and that we will go on to have healthy children.  In July 2008 we learned that we were once again expecting.  We were very excited, but also a bit nervous.  On September 2, 2008 we had our first appointment with our doctor.  Our pregnancy was confirmed and we even heard a heartbeat.  What a precious sound that was.  We had a couple of more routine appointments over the weeks and everything seemed to be progressing nicely. On October 27, 2008 we were scheduled for our first ultrasound.  We were 18 weeks pregnant and we would get to find out if we were having a boy or a girl.  We were so excited.  The ultrasound technician began the scanning process and we were thrilled to see fingers, toes and, especially, a strong heartbeat.  We also discovered that we were having a little boy.  The ultrasound technician printed off a few pictures and told us that she had to go show them to our doctor and that she would be right back.  When she returned with our doctor and an ultrasound specialist we immediately knew that something was wrong.  The specialist did some scanning and proceeded to tell us that there was not only one little boy, but two.  However, they were very severely conjoined.  We were immediately overwhelmed with a flood of emotions and our hearts were shattered.

We were pregnant with a severely conjoined form of Dicephalus twins, Ezekiel (Zeke) and Zachariah (Zach).  Often times these types of conjoined twins are delivered stillborn and if they do manage to make it to full term they usually only live for a few hours.  Our little guys each had their own head, spine, stomach and liver.  Between the two of them there were three arms and two legs.  However, they shared only one set of lungs and one very abnormal heart, which made separating them impossible and their chance for survival pretty much nonexistent.  Zach had no complications of his own. However, Zeke was our little bundle of medical issues.  He had something called Dandy Walker Syndrome, which is literally a missing piece of the brain, he had a hernia which caused an elevated stomach and liver, he had a clubbed foot, and he had fluid on the back of his head which was most likely caused by the abnormality of the heart.  Due to the many ultrasounds that we had after learning about the condition of our boys, we developed a very special bond with them before they were even born.  It was interesting to learn about their very detailed and intricate body and it was amazing to watch them grow.

During our pregnancy, we had awesome support from both of our families, our church family, our friends and our doctors were incredible.  We are extremely grateful for the encouragement, support, love and generosity that so many people showed us.  We could not even imagine how difficult it would have been to go through the pregnancy of our boys feeling alone. 

On Saturday, January 3, 2009, at 28 weeks pregnant, we headed to the emergency room when I started feeling some pretty intense contractions. I was admitted to the hospital and Ezekiel and Zachariah were born on Thursday, January 8th at 1:58 p.m. via c-section.  They weighed 3 lbs. 14.6 oz. and were 13 ½ inches long.  They lived for just over an hour and passed away at 3:16 p.m.  The delivery of our boys was spectacular.  They never opened their eyes or cried, but they moved their arms and legs, held our fingers and hung onto life for as long as they could.  I will never forget how their warm, wet body felt as they were lying on my chest.

The Fetal Hope Foundation was such a huge blessing to us.  My sister-in-law contacted them and told them that my husband had a brother and a sister in California and we, unfortunately, could not afford to fly them home for the birth/death of their nephews.  The Fetal Hope Foundation did not hesitate.  That same day they funded the cost of two airplane tickets from California to Michigan and my husband’s brother and sister were able to hold their nephews before they passed away.  Our experience was life changing, our boys were more precious and beautiful than we could have ever imagined and The Fetal Hope Foundation gave us a gift that we will always cherish.