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.

It’s late February 2009 and I just finished a phone conversation with Lonnie Somers, the founder of the Fetal Hope organization. Lonnie’s twin daughters were born with TTTS, Twin-to-Twin Transfusion Syndrome. Together Lonnie and his wife Michelle created their foundation to provide awareness, hope and support to those parents who will be affected by TTTS and other fetal syndromes.  I contacted Lonnie because his organization also helps those affected by ABS, Amniotic Band Syndrome.

In 2002 I started poking around on the internet to see if I could find information about why my body is the way it is. I came across the name Amniotic Band Syndrome on a website called WebMD. The symptoms of this condition pretty closely matched the things that are different with my body. Further investigation of pictures I had found online of people with ABS, I knew for certain was what I was born with.  It would be six years before I bothered to do anything with the information and before I realized what a gift I actually had.

The reason I contacted Fetal Hope was because I had an idea of riding my bicycle from my home in Michigan to

I was born on August 18th, 1976 at

Seven days later when my mother was released from the hospital she went straight to the

I can’t imagine what my parents went through those first few months and even throughout my childhood. I had so many doctor appointments and surgeries. I spent sometimes weeks at a time in

My stays in the hospital, as a baby then later as a child, were so long and frequent that I joked that I should have my own room. Laughter was something I picked up on early in life. If laughter was indeed the best medicine, I was going to need a lot of it. Up until my sister Jennifer was born my mom was there whenever I was. Every doctor’s visit or hospital stay she was there with me. Sometimes they had a bed for her in my room and sometimes she would sleep in the waiting room at the end of the hall. It is absolutely wonderful to have such a loving family beside me. I am certain that is how I made it through all those scary times as a child. I was never alone while going through a new surgery or recovering from the last one. I have always had family around me with words of support or even just being beside me while I went through all of it.

I am very thankful for all the times someone sat with me in a doctor’s office or waited in a waiting room for hours on end while I went through another surgical procedure to make my quality of life better. I promised myself when I was young that when I had the chance to be there for someone else I wasn’t going to turn it down. It would be a way for me to give a little something back that I had been given. To this day I still take every opportunity I can to sit with a loved one while they recover from being sick or wait the results of a medical test.

So what exactly is ABS and how did it affect me? It is a set of congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero. Before I was born the body parts that shows signs of ABS (arm, fingers, toes, etc.,) were caught up and entangled in string-like bands. This caused abnormalities that were present at birth. With Amniotic Banding no two cases are exactly alike. There are several features that are relatively consistent: syndactyly (webbed digits), distal ring constrictions, deformity of the nails, stunted growth of the small bones in the digits, limb length discrepancy, distal lymph edema (swelling), and congenital band indentations. ABS affects approximately 1 in every 1200 live births. It is also believed to be the cause of 2% of all miscarriages. Recent literature supports that ABS occurs more often than once thought. Up to 50% of cases have other congenital anomalies including cleft lip and palate and clubbed foot deformity. Hand and finger anomalies occur in up to 80%. I was born with all of these. A cleft lip and palate is basically a giant hole in my face between my mouth and nose. The results of the upper lip and upper jaw not being completely developed, leaving a sizeable gap in the middle of my face. I am missing parts of my ring finger and all of my middle finger on my left hand. My right hand has all of the thumb and index finger but missing most of the other three fingers. On my right leg, just below the knee was a little cartilage filled foot but no lower leg bones to support it. So this was amputated, shortly after I arrived at University of Michigan Hospital after my birth. In some cases a complete “natural” amputation of a digit(s) or limb may occur before birth or the digit(s) or limbs may be necrotic (dead) and require surgical amputation following birth. I was fitted for my first prosthesis at nine months old. I took to it pretty quickly because it gave me the freedom to keep up with the other kids. At the age of 15 months I was walking on my own with help from the prosthesis. Even to this day I would much rather wear it then to leave it off. It gives me the freedom to move when I want to and without a great deal of pain and discomfort.

ABS can sometimes be corrected with surgery before birth with new advances in technology.  This wasn’t available until the mid 90’s. It certainly wasn’t thought of in 1976.

I grew up feeling like I was the only one around who was missing a limb and some fingers.  The internet wasn’t around and all I had for evidence were the people in my hometown.  The feeling of isolation seemed to fuel this idea of life being unfair to me.  I became severely jaded and bitter at the hand that I was dealt.  The anger issues worsened as I got older and many people simply refuse to deal with me anymore.  I felt like a train wreck just waiting for the big crash to come.  I spent 15 years angry before a 2002 divorce sent me to the bottom of this self made pit of anger and frustration.  On my 30th birthday in 2006 I woke up in the morning and felt different. I felt more relaxed about life and more comfortable in my own skin.  I can’t really pinpoint a specific instance that occurred to change my direction. It quite literally happened over night.  As I became more comfortable with myself and Amniotic Band Syndrome I started to look for ways that I could help others in my situation.  My hope is that if a child knows he isn’t fighting this alone then maybe he won’t go through the horrible tortures that pity, bitterness and anger can bring.  I finally figured out I have a wonderful gift and I wouldn’t change my life for anything.  With the help of the Fetal Hope Foundation and my 2010 Bike Ride from Michigan to

If you have any questions or concerns that I might be able to help with please contact me on Facebook at www.facebook.com/rideforhope

or privately at chrisntiff2008@yahoo.com

Thank you for reading my story and for your continued support of the Fetal Hope Foundation and children and families all over the globe.

Sincerely,

Chris Bowman

John and Kelsey Palmer were so excited to be pregnant.  Kelsey was about 8 ½ weeks along when she found out she would be having twins!  Kelsey had two ultrasounds to confirm that there were two babies.  Around thirteen weeks she had a follow-up ultrasound for growth and development.  It was during this ultrasound the technician was unable to see a membrane separating the twins and when John and Kelsey were sent to a perinatologist for further ultrasound testing.  “We were very nervous that we might lose our twins,” says Kelsey.
 
During the follow up ultrasound, which Kelsey said “seemed to take forever,” they were still unable to see a membrane.  After doing a trans-vaginal ultrasound, they were able to see a membrane separating the babies. “We were both so relieved,” explains Kelsey.  “I felt like everything was going to be ok and that we both were going to be able to relax for a little.”

Over the next few weeks they just enjoyed being pregnant, with girls! They took a vacation to San Francisco and were both having fun buying baby things.  Then, around twenty-one weeks, a problem was discovered during a follow-up ultrasound.  The ultrasound tech had their doctor come in to continue the rest of the ultrasound.  At the conclusion of the ultrasound John and Kelsey were told that there was a possibility that their girls could have Twin-to-Twin Transfusion Syndrome, or TTTS.  This is when the babies share a placenta and also have connecting blood vessels.  One twin is usually the donor and one is the recipient.  Their doctor also said it appeared that one of the babies might possibly have a two vessel umbilical cord.  Normally there are three vessels.  Kelsey was told to come back in a week so they could check on the girls again. 
That next week was filled with research and worry for John and Kelsey.  After their next follow-up, the doctor told them that it looked like they had TTTS.  Their options at this point were to do nothing and just watch while our babies got sicker, or their doctor could refer them to a surgeon that specialized in TTTS laser surgery.  “We opted for the referral and went to Evergreen Medical center to see Dr. Walker.”
They decided in the meantime to name their girls. “I just thought if they were going to have to go through surgery, and there was a chance they may not survive, that we should name them now,” explains Kelsey.   “We chose Khloe (which means blooming) and Kallie (which means beautiful).  John came up with the middle names by splitting my middle name, Elizabeth, so that they would both have a part of my name.”  At this point the future was very uncertain for Khole Liz and Kallie Beth.  John and Kelsey tried to stay calm and not worry too much, even though they knew that they might not have both of their beautiful babies to love.

After seeing Dr. Walker their hopes were even worse.  He said that the girls did have TTTS and that Kallie, their smaller twin, did have a two vessel cord and her cord was also inserted on the edge of the placenta instead of the center.  This made it very difficult for her to receive adequate perfusion.  So they were faced with a very difficult decision. “Kallie was working very hard to survive, and if she were to die Khloe could die also because of their shared blood vessels,” explains Kelsey.  John and Kelsey were given the options of doing nothing, having laser surgery to separate the girls, or having the surgery and ligating off Kallie’s cord so that Khloe would be guaranteed survival.  After many tears and much discussion, John and Kelsey decided to have the surgery.  They did not, however, opt for the cord ligation because they felt that they had to give both of their babies every opportunity to survive.  “In having the surgery we were hopeful that Kallie, who was the donor, would receive increased perfusion and do better afterwards.  Neither one of us could imagine life without both of our girls,” says Kelsey.
The surgery went well, and both babies were alive and doing fine.  John and Kelsey were very relieved, and felt like everything was going to be okay.  The next day, before Kelsey was discharged, another ultrasound was performed to see how the babies were doing. “Then we received the worst news of our lives.”  Sometime during the night, Kallie Beth did not survive.  Khloe was still alive and looked to be doing well.  John and Kelsey were devastated and shocked.  They could not believe they had lost one of their babies.
 
The next several weeks were very hard.  “We both cried a lot,” says Kelsey.  “And it was hard for either of us to talk about for awhile.”  The hardest part for Kelsey, who works as a labor and delivery nurse, was when she was at work and patients would ask her what she was having.  “It was so hard to know what to say,” she says.  Kelsey continued to carry Khloe until she was thirty-nine weeks and two days, when she was born a healthy 7# 1oz.

After Khloe was born John and Kelsey had a quiet moment with both of their girls.  “Kallie still lives with us every day in our hearts, and Khloe knows that she has a sissy in heaven watching over her,” explains Kelsey.  Every year on their birthday John and Kelsey get two balloons; one for Khloe to keep and one for her to send to sissy Kallie in heaven.  “It is still hard even three years later to think that we should have two beautiful girls that look like Khloe,” says John.   “I sometimes wonder what they would have been like together and if Kallie’s personality would have been similar or different from Khloe’s.  Even though we miss Kallie so much, Khloe is our living angel, and I think we love her even more after this experience.  I know God is watching out for our angel in heaven and some day we will see her again.”
“Going through this journey has definitely made our family closer,” insists Kelsey.  John and Kelsey have also become involved with the Fetal Hope Foundation.  “It has been great to meet others who have gone through similar situations, and also to know that we are helping raise money toward something this meaningful.”
 

Lisa and Bryan Beymer’s story began much the same as many other couples who have become victims of Twin to Twin Transfusion Syndrome (TTTS).  They were thrilled to find out they were expecting a baby and were looking forward to starting their family together.  They had all the standard blood tests, and became very concerned when their quad test at 15 weeks came back outside the normal range.  The follow up ultrasound showed that there were TWO babies!  They were shocked to find out they’d be looking forward to twins, but it only took a couple of hours to fall in love with the idea, and with both of their babies. 

During that same ultrasound they were told that it looked as though their twins were mono-amniotic (shared the same amniotic sack).  This is a rare and very dangerous complication for identical twins.  Lisa and Bryan claim they were very naive- they didn’t know what they were facing and tried to focus on their babies and the life they wanted to make with them.  They were told they were too “high risk” for their current doctor’s office, and it was recommended that they go to a different area hospital for a higher resolution ultrasound.  It was a whirl wind of internet research, new doctor appointments, and the feeling of being lost in a medical works they didn’t understand.
 
Lisa’s higher resolution ultrasound did show a membrane between the babies, but at the same time her babies were diagnosed with TTTS.  This gave Lisa and Bryan a moment of relief (having the membrane between them was a good thing), but plunged them into a whole now world of research and concern for what was to come.  That is when they were referred to Dr. Martin Walker at the Maternal Fetal Medicine clinic at

The surgery went smoothly, and Lisa’s night spent in the hospital to monitor for contractions and any sign of distress was as comfortable as it could have been.  All went well, and as early as the next morning an ultrasound showed that the fluid levels for both babies were beginning to level out.  The Beymers were increasingly optimistic that they had beaten the syndrome and would soon have two beautiful boys at home with them. 
 
Unfortunately, Lisa and Byan’s story ends differently.  The surgery seemed to be a success, and the condition improved for the next 6 weeks.  “Then, at 24 weeks, we lost our “baby B”, Jacob.  We were devastated.  We had worked hard to prepare ourselves for a loss prior to the surgery, but in the weeks that followed it we had allowed ourselves to feel increasingly optimistic.”  They now focused on their survivor, Noah.  Noah was the recipient, he was larger and stronger.  “Dr. Walker was very up front with us, though,” adds Lisa.  “Noah was still in danger.” 

The surgery had caused a leak in Noah’s amniotic sack that had separated it from the wall of the uterus.  Lisa and Bryan were told there was a chance Noah would cause that hole to grow and would be in danger from the shredded membrane.  3 weeks after the loss of Jacob, the shredded membrane found its way around the umbilical cord and Noah was lost as well.
 
Noah and Jacob were born sleeping on Dec. 29, 2005.  “Although we clearly did not get the result we were hoping for, we were so touched by the kindness of the people we met along the way.  From the doctors and nurses at Evergreen, the families we met who had the same look of apprehension on their faces in the waiting room, to the strangers who took the time to read and answer internet posts and bring us comfort that we weren’t alone.  We spent a long time quietly in our living room trying to understand why this had happened to us and what we could learn from our heartbreaking experience.  What we discovered was that we had an incredible group of friends and family around us who had stood with us through the entire fight, and had shown us how lucky we were to have such an army of support.  We learned to believe in the strength of our relationship and that there was nothing we couldn’t get through together, and we learned to believe in the kindness of strangers.” 

Lisa and Bryan still miss Noah and Jacob everyday and the lives they should have had, and claim to never be the same people they were before their battle with TTTS.  “But,” adds Lisa, “we are stronger and more appreciative of what we have as a result.  I got invlovled with the Fetal Hope Foundation’s