Our story began in early March 2007 when we found out that we were expecting not one, but TWO babies. We were completely shocked but overjoyed and excited to start our family. At our 12 week ultrasound, they told us the babies were identical and at 14 weeks we found out they were sweet little girls! By now it was May and little did we know how our lives were about to change. During our routine perinatologist visit at 18 weeks, we quickly discovered something was very wrong with our babies. The doctor could not have been more unprofessional or gruff or pessimistic when he told us that our girls suffered from a severe case of Twin To Twin Transfusion Syndrome. My husband and I were completely overwhelmed and devastated and lost to say the least. After much research, and many phone calls, we found Dr Ruben Quintero, an incredible man who just so happened to be the pioneer of the newest treatment for TTTS… AND who just so happened to practice at a hospital just three miles from our home. The next few days were a blur of tests, questions and prayers. We found Fetal Hope and began to feel optimistic! Within five days of our original diagnosis I was checked in Tampa General for laser surgery with Dr Quintero. There was never a doubt as to what we should do for our babies. I was a stage IIIb at this time and we felt very confident in our decision and in our surgeon. We wanted to give our children every possible chance to fight this horrible disease.
The surgery was a success and we cried tears of relief at the sound of “TWO HEARTBEATS” on our morning ultrasound. The next few weeks were spent on bed rest and things were looking good. But at 23 weeks, the u/s tech noticed something wasn’t quite right with our previous donor’s heart and we were sent to a fetal cardiologist for an evaluation. Twin B (our donor, not our recipient) was diagnosed with a right ventricular cardiomyopathy and given a stage of heart failure. Just as we were coming up for air from the surgery, we were knocked down again. I continued to be closely monitored and Twin B’s heart seemed to slightly improve. They could not tell if she had a pulmonary stenosis or a stunned ventricle but they sent us off to meet with the cardiac surgeon. We were treading water at this point, not sure if we could handle much more. Fetal Hope was such a source of strength for us during this time. Other heart moms reached out to me and shared their stories and made me feel like we could do this. The next 12 weeks were filled with constant prayer and lots of doctors’ appointments.
We made it to 35 weeks when Adelaide (A) and Genevieve (B) were born on September 5th 2007, weighing 4 lbs 8 oz and 3 lb 13 oz, respectively. Both girls gave hearty cries and were swept off to the NICU. Genevieve was quickly transferred across the street to the Cardiac ICU and she was in very grave condition. Our sweet girl was much sicker then we could have imagined. She was put on the schedule for open heart surgery (to core out and enlarge her right ventricle, among other things) at 5 days of life. In a twist of events, Genevieve was actually too sick to go to surgery and the next few weeks were very touch and go. Sweet Adelaide spent two weeks as a feeder and grower in the NICU and then was discharged home, amen! While it was a challenge having one in the hospital and one at home, we were so grateful to have her in our arms!
As the weeks passed, Genevieve too grew stronger and her little heart started to stabilize. After six long weeks, they said we could take her home… for a little while. JUST until she was big enough for surgery or JUST until she got too sick at home --- we were terrified!! When I look back at those days I am so grateful for all the help we received. Our families and friends were so amazing to us. Helping with the babies, bringing us dinner, holding us in constant prayer… it really took a village.
Our Genevieve was a regular in the cardiac clinic that first year and at every visit we saw progress in her heart, and doctors who told us her healing was miraculous. They still say she may need surgery one day, but her right ventricle (though small) functions at normal levels! What a miracle. Actually, what miracles. We feel so blessed to have the outcome that we do, TWO healthy and happy four year old girls. Adelaide and Genevieve are incredible, sweet and funny little girls. They adore their new baby brother and are the light of our lives. We are forever grateful to the Fetal Hope Foundation and Dr Quintero for the roles they have played in our story. Our lives will never be the same and we are so grateful to God for our many blessings.
Elizabeth & Christopher Carrere