Written by: Elizabeth and Genevieve Carrere
There is nothing quite like the excitement you feel when you find out that you are pregnant for the first time. My husband and I found out I was expecting in January of 2007, and very quickly discovered that the road ahead was going to be unlike anything we expected. At our first ultrasound, we learned that SURPRISE, we were pregnant with not one but two baby girls. The babies shared an amniotic sac and a placenta, which meant they were identical. To say we were shocked was an understatement, but mostly we were just eager to meet our two little girls that fall.
In May, our babies were diagnosed with a rare and deadly complication called Twin-Twin Transfusion Syndrome or TTTS. TTTS is a disease of the placenta, where blood flow is shared unevenly between the babies. This leads to blood and fluid overload for the recipient twin (often leading to heart failure), and for the donor twin, there is restricted blood flow (which can lead to anemia and death.) Left untreated, the mortality rate nears 100%. We were devastated. Thankfully, we lived in Tampa, and the world’s leading expert on the disease was practicing at Tampa General Hospital. Dr. Ruben Quintero was able to offer our babies a fighting chance as he performed fetoscopic surgery at 18 weeks gestation. Dr. Quintero was a godsend to us, both medically and personally. Our surgery was a success and I was discharged home. After almost 4 weeks of home bed rest, the babies were declared ‘cured’ of the TTTS. While we would still be closely monitored, there was a sense of relief and we focused on keeping me pregnant as long as possible.
Our joy was short-lived as our twin B, our donor baby, was found to be in heart failure at our 22-week ultrasound. We were quickly sent to see a fetal cardiologist and told that our donor’s right ventricle appeared to be ‘stunned’ and that there was very little blood flow through her pulmonary valve. This was likely caused by the TTTS and the correction of the uneven blood flow, but we were atypical because this was our donor baby that was affected. Usually, in TTTS, the recipient twin is the one who faces heart failure and/or cardiac abnormalities. Again we faced uncertainty, but our strong faith and unwavering support of our family and friends continued to sustain us.
After another 4 months of home bed rest, countless appointments and ultrasounds, and prayers, our girls were born on September 5th at 35 weeks. Twin A (Adelaide) weighed 4 lb 8 oz and went to the NICU as a feeder and grower. Twin B (Genevieve) weighed 3 lb 13 oz and was immediately transferred to the Pediatric Cardiac ICU. The next 6 weeks were some of the hardest of our lives. Genevieve was sicker than we imagined and was scheduled for open-heart surgery at just five-days-old. In an unexpected twist, she became too sick for the surgery and spent the next month incubated, sedated and paralyzed while we waited and watched. Her lungs were very sick, and her heart was diagnosed with hypoplastic right ventricle, RVOTO (right ventricular outflow tract obstruction), PFO (patent foramen ovale, a hole between the top two chambers of the heart), and other deformities.
Genevieve’s heart condition is not common and her doctors decided that if she could get her lungs healthy, then she could go home and grow before her heart surgery. So after 6 weeks in the PCICU, 6 weeks of back and forth between two hospitals and home, Genevieve and Adelaide were finally back together and home at last. We had both of our miracle girls with us and we were so grateful.
Genevieve was a frequent visitor at the cardiac clinic and each time the news got better. Her right ventricle began to grow, the thickened area under her pulmonary valve slowly began to thin out, the blood flow improved through the valve and her oxygen saturations began to rise. By the time she was one year old, the big open heart surgery seemed to be off the table. It was miraculous. Even our beloved cardiologist, Dr. Elsa Suh at St Joseph’s Children’s Hospital, said there was no medical explanation for her healing. Today, Genevieve is twelve years old and a happy and healthy sixth-grader. She continues her yearly cardiac follow-up, including stress tests, echos, EKGs and more. She is a stellar student and loves being active and helping others. Her heart is not perfect but it is perfect for her. She has no physical restrictions or complications from her defects and lives a full and healthy life.
That is a long background story to explain how we became a heart family, and why this month is special to us. February 7-14, 2020 is Congenital Heart Defect (CHD) Awareness Week. A CHD is when something is wrong with the child’s heart structure at birth. CHDs are the most common birth defects in the United States, affecting nearly 1 in 100 babies born each year. It was a great joy for our family when High Risk Hope’s NICU Napsacks began to be delivered to the PCICU at St Joseph’s Children’s Hospital. High Risk Hope was not yet formed when I was on bed rest and our twins were in the NICU and the PCICU twelve years ago. However, it was our experience in those places that have driven our family to serve others going through high risk pregnancies, bed rest, CHD diagnoses and ICU stays with their babies.
Serving on the board of HRH for the past nine years has allowed our family to give back and to have the platform to encourage others in their own journey. I have met and connected with so many amazing families through my work with HRH, and hopefully given them support and encouragement for their own battles. My husband and I were fortunate to have amazing families and friends who came alongside us, providing meals, childcare, and countless prayers during a difficult time. We were connected to other heart families who shared their stories and gave us HOPE. We had an amazing team of doctors and nurses at both TGH and St Joseph’s who provided us excellent care, medically and personally. We are grateful to God and so many incredible people who have helped us get to where we are today.
I asked our daughter Genevieve to share a little about her experience being a ‘cardiac kid’ and our involvement with High Risk Hope:
What do you know about your birth/ICU time?
“I know that my sister and I were born with TTTS. I was the smaller one out of the two. I was born with a small right ventricle and a hole in the top of my heart. A couple of days later I was going to have heart surgery to fix my heart, but then the doctors realized that I was too sick. My heart didn’t need to be fixed, and God wanted to keep me like this because this was how He planned it. Then I stayed in the ICU for a long time. I know that I was hooked up to a lot of machines to help with my breathing and all sorts of things.”
What does it mean to you to be a heart kid/patient?
“To be a heart patient means that I get to show God’s story in me. A lot of people say ‘wow, I can’t even see her scar,’ to my mom. Then she or I explain that I actually don’t have a scar at all. Every year I go to a checkup to see how my heart is doing. It is actually really fun to hear and see my heart working.”
Why are you/your family involved with HRH?
“My mom and some of her friends started High Risk Hope to help moms and families who need help or support during a time when their babies are in the NICU or the women on bed rest. HRH was not around when my sister and I were born. My siblings, Adelaide (my twin) and my brother Jack help deliver the Bed Rest Baskets and the NICU Napsacks and it is really fun. I hope when people see my picture on HRH pamphlets and books they are inspired by our story. We also love to raise money for the HRH Tot Trot and bring our friends out to the event.”
Why is February a special month for you?
“February is a special month to me because it is American Heart Month and it is a great time to spread awareness about CHD (congenital heart diseases) in children and to share stories of inspiration! Plus, it’s Valentine’s Day and the perfect time to talk about love and helping others :)”