I once thought the loss of a child would ruin me forever.  I now consider my daughter’s sweet life to be one of my greatest gifts of all… It was three years ago last month that my husband and I learned we were expecting twins.  We were in shock!  We had always hoped for a big family but never did we dream things would get off to such an exciting start!! The pregnancy was amazing, and at our five month check-up we learned that we had been blessed with identical twin girls.  Our twins appeared to be in perfect health for the first six months.  However, I arrived at my six and a half month doctor’s appointment only to find that I was in labor. Though I could not feel my contractions, I was admitted to Labor and Delivery (apparently in labor), and given all kinds of medications over the next three days in attempt to stop my contractions.  On the third day, when no amount of medication had been able to stop my labor, I knew something was not right. 

Two perinatologists were consulted and within minutes of conducting a high-level sonogram, our girls were diagnosed with acute onset of Twin to Twin Transfusion Syndrome.  I had never even heard of such a complication. Though TTTS had been present since conception, there was no fluid transfer between our girls until weeks 24-26 of the pregnancy.  The perinatolgists discovered via sonogram that our donor twin, Alexa, had essentially no fluid remaining in her amniotic sac.  Our receiving twin, Alysa, had so much fluid in her amniotic sac that her heart rate was beginning to drop due to stress of pumping the extra fluid, and pressure from the extra fluid had already caused what would later be categorized as a Grade IV brain hemorrhage, the severest of bleeds. The decision to deliver was easy.  The neonatal intensive care team could do much more for our girls outside of the womb.  Alexa and Alysa were delivered by emergency C-section at just 26 weeks’ gestation.  Each girl was born weighing 1lb 15ozs; less than 2lbs each. Though Alexa endured countless struggles during her 89-day stay in Neonatal Intensive Care, she is now a perfectly healthy, normal, almost three-year-old child.  Sadly, Alysa passed away as a result of complications from intraventricular hemorrhage (IVH) at just 28 days. 

After my daughter passed way, life as I knew it was over.  Though I was overjoyed at the life of my surviving twin daughter, I thought my dreams of living an extraordinary life were gone.  For months I grieved not only for the loss of my twin daughter, but also for what I thought would forever be the loss of greatness in life.  I questioned how I would ever recover from the loss of my child. But as a woman of faith, eventually, I chose to surrender my grief to the ultimate Healer.  I learned to accept my daughter’s death as part of my life experience, and let my experience inspire me towards a new way of living. I’ve seen just how short life can be.  Alysa’s death taught me how to reprioritize the important things in life.  I’ve realized that it is the simplest things, such as faith, family, and friends, that matter most.   Though I once could only think of all that I had lost, I’ve learned to be grateful for what I did get.  I did get to be pregnant with twins, even if only for six and a half months.  I did get to have identical twin daughters who we named Alexa and Alysa.  Though I did not get to bring my twins home together, I think of the joy I experienced in feeling the girls together inside my womb.  I am thankful for every moment I did get to spend with my daughter Alysa.   

As a mother, I can’t help but think about what might have been.  But because I have learned to embrace my daughter’s death as part of my life experience, I no longer think about what should have been.  I know that my life is just as it should be.  I find great healing and freedom in living from this perspective. Though much too short, Alysa’s life taught me how to truly live.  And it is that gift of life, both mine and my daughter Alysa’s, for which I am eternally grateful. I am proud to know Mr. Lonnie Somers and the Fetal Hope Foundation because the diagnosis of TTTS or any other fetal-related syndrome is truly a burden no parent should have to bear alone.  The Fetal Hope Foundation does more than build awareness and raise funds for research—they give affected families the precious gift of hope.

I am the mother of twins.  

Please allow me to share my story with all of you- My husband and I had tried to get pregnant for four long years. We went through so many procedures and tests. You cannot imagine the devastation when I found out it was very unlikely I would ever get pregnant on my own. I had gone to the appointment by myself figuring things were great and my husband was on his way up to hunting camp over 300 miles away. I can’t believe I kept it together so long in the office however once in my car I let the flood of emotion wash over me and let the tears flow. I called my husband almost hysterical and explained the situation between sobs. He barely understood me. I had endometriosis which creates toxins not conducive to getting pregnant.

After much debate we decided to dive into the in-vitro fertilization process with some family members telling us we were crazy; we might have 8 kids or something. We sold our house so we could use all the collateral we had in it, closed our retirement accounts and began the long process of shots, blood draws and daily appointments. Ignorance can be bliss because when I was told I had an 83% chance of this working,  I didn’t realize they meant in the first 3 tries. I just knew it was going to take on the first one.  It did. 

Only a woman who has been told she has two tiny heartbeats can imagine the bliss of being pregnant with twins. I was in awe. My husband was a little shaken. We had two tiny heart-beating peanuts in one tiny sac. We were having identicals. I had hoped for a girl and a boy in this process however my siblings assured me this was so much cooler.At sixteen and a half weeks we were going in for our third ultra sound; this one to find out the sex. We were having boys. I loved watching them move around and my friend was in awe. We never realized they were concerned and taking extra long until the doctor came in. We had TTTS or Twin to Twin Transfusion Syndrome. As they explained this evil syndrome, I felt like I had an enormous slab of concrete sitting on my chest. I maintained my composer in the office, but I’m not sure how. I felt anything but calm. My miracle pregnancy was in jeopardy and the long battle began.  

Every appointment there was more devastating news. We had to make the most difficult choices of our lives. As they struggled, so did we and I continued to be strong and positive despite everything. As their tiny hearts began to give out we were sent to a fertility center to save our babies. Only our doctors could not save both lives and we lost our sweet donor. It was the worst day of my life.   Yet I was still pregnant and the very next day they were seeing improvement in our recipient’s heart. I had to stay calm and focused and most importantly positive. Our battle had just begun as I had an ever shortening cervix, constant contractions and a long tour of bed-rest in the hospital.  The day had come to deliver these sweet babies. We had somehow, by the power of prayer, made it to 36 weeks. Not even my doctors could believe it. You cannot imagine the power of this bitter sweet moment; the bliss of delivering a baby that has struggled so hard, have him snuggled even for a moment in your arms and know he is safe (yet his journey was far from over), and the shear devastation of delivering a baby so tiny, so still and holding him in the palm of your hand wishing things were different. The pain is unbearable.

Time heals all wounds they say, however as a wound heals and begins to close it is often jagged, rough, red and ugly. It is often raised and occasionally even sore. Over time it softens and fades but it never disappears. It is always there to remind us of our battles and our losses.   I was often shocked when people would say with the best of intentions, “Well at least you still have one baby.” As if this was some sort of consolation for my troubles. You would never say to someone who has lost a leg, “Well at least you still have the other leg.” Yet I have now met families who went home after their long toils with pregnancy empty handed and with not even one of their babies.  So in a way I am blessed that at least I do still have one single twin survivor.  

My son is now almost 3 and I love him with all my heart, however there is always something missing.  I don’t get to know what it is like to hear them giggle together or wonder what trouble they are conjuring up together. I don’t get to watch them both blow out their birthday candles together. I am the mother of a single twin survivor. I honor and celebrate my children every day by working with the Fetal Hope Foundation. I help spread awareness. I provide support to families who have lost one or both of their babies. I help organize events to raise money to help other families save their babies. I help provide hope!!

I am the mother of Twins!! 

I encourage everyone to help provide hope by donating, participating in the Fetal Hope events, and/or volunteering.

In an effort to highlight important information pertaining to fetal syndromes and distresses, Fetal Hope now has a BLOG.  Here you will find information pertaining to the latest research, upcoming fundraising events, scientific findings, guest writers and much more.

Fetal syndromes and distresses affect over 800,000 babies each year in the U.S.  Sadly we lose over 200 babies a day.  Everything from TTTS (Twin-to-Twin Transfusion Syndrome) to issues causing premature birth and then death are affecting our unborn children.

We have a lot of work to do, but Fetal Hope and its partners are leading the way to bring improved outcomes.  Funding is a major issue in prenatal/fetal care.  On average, less than $100 per case (800,000) goes to research and support.  In comparison, breast cancer has nearly 200,000 new diagnosis each year, yet has over $2500 per case going to research. We need to do more, we all need to be activist. 

Those of us parents that have had a child survive a fetal distress or syndrome typically and rightfully support directly any condition our survivors have (such as Cerebral Palsy,  autism, etc.), however there are underling issues during pregnancy that may have lead to the distress or syndrome.  We need to understand more and we need to do this through research, awareness and activism. 

The support and strides in breast cancer would not be where they are today without Susan G. Komen Foundation.  Through Fetal Hope, we can do the same for fetal distresses and syndromes.  We will never be able to fully eliminate all distresses and syndromes, but we can make a major impact. 

I encourage you all to get involved, support Fetal Hope, or offer direct support to research and fetal care centers, write your congress representatives and ask for more funding in these important areas, etc. Together we are Leading the way to HOPE…..

Lonnie Somers
CEO & Founder
Fetal Hope Foundation