Charlotte, Jack and CHD

  • January 12, 2019

Today, Sarah shares the story of her two children with CHD. First, daughter Charlotte was diagnosed, then son Jack.

After a quick labor and a normal pregnancy, just like my first, we met our beautiful daughter Charlotte and looked on in awe as her APGAR test was performed. But I vividly remember watching my husband Thomas, standing over Charlotte, grow increasingly concerned as the doctor’s assessed her condition. Charlotte was blue at birth, and despite seemingly normal breathing, she continued to get bluer. The nurses brought Charlotte over to me and told me to hold her for a minute before she was rushed to the NICU. I’ll never forget trying to take in the curves of her face, her smell, how she felt in my arms – before they took her away.

Several terrifying hours passed without any answers or improvement. Her oxygen levels continued to drop. Finally, eight hours after Charlotte was born, Dr. James Sutherland from Sibley came into our room and told us that our daughter had Pulmonary Atresia, a congenital heart defect. With her completely obstructed pulmonary valve, her heart couldn’t pump blood to her lungs. Dr. Sutherland patiently and compassionately explained that she would first need to have her pulmonary valve opened, and then discussed the subsequent care she would need. In what had been a terrifying day, Dr. Sutherland gave us hope and confidence that Charlotte was going to be fine. I will never forget him saying,

“You’re going to have a hard few days, but you’re going to get through it.” We hung onto those words like a life raft.

The next two weeks were unquestionably the hardest days of our lives. Charlotte was transferred from the Piedmont NICU to Children’s Healthcare of Atlanta at Egleston for her repair, which took place in the Cath Lab on her third day. While the procedure lasted only four hours, it felt like an eternity. The waiting, praying and pacing was almost unbearable. But the staff at Egleston was incredible, from the nurses and doctors, to the family advocates, to the chaplain. We were never alone.

Charlotte’s repair was a success. During the following 10 days, they monitored her progress to ensure no further intervention was necessary. Thomas and I felt like we were drinking from a firehose. We desperately wanted to understand the intricacies of Charlotte’s defect, the anatomy of her heart, and the factors and indicators that provided a barometer for her overall health. Once again, the staff at Egleston patiently guided us through this process. They answered and re-answered our questions, took calls in the middle of the night, and connected us to the resources we needed from a health and an emotional support perspective so that we could focus on moving forward without being crippled by fear.

Fifteen days after Charlotte was born, we got to bring her home to meet her two year old big brother, Boone. With each passing month and visit to Sibley, the clouds that had followed us since her birth dissipated a little more. Dr. Sutherland, and then since his retirement, Dr. Slesnick, kept a close eye on her. She will need interventions as she gets older, but the timeline has always been unclear. This is a tough reality to live with, but the continued support, encouragement and transparency from all the amazing people at Sibley has allowed us to build confidence in Charlotte’s future and our ability to manage her health in a way that is not disruptive to her or her brother Boone.

When Charlotte was seven months old, we found out we were expecting another little boy. While we were ecstatic, we were really concerned about the baby’s heart. Our OB and Dr. Slesnick at Sibley agreed that we needed fetal echos as he got bigger. The first fetal echo with my perinatologist at 20 weeks showed no abnormalities, which we took as a sign that we were in the clear. But after further discussion with the experts at Sibley, we decided to schedule an additional fetal echo with them at 30 weeks. We were devastated to find out that our son would also be a Heart Hero. He had a rare abnormality called Left Ventricle to Aorta Tunnel and would likely need surgery at birth.

While we had made good progress finding normalcy in the world of heart warriors after Charlotte’s birth, the news that we were going back to the starting line with another baby was crippling. I was desperate for answers to better understand why this was happening and what was going to happen when our baby, Jack, was born. The support that we received from Sibley was literally a lifeline for us in those 10 weeks. We had a caseworker who was compassionate, extremely responsive and resourceful.  The cardiac geneticist, doctors, nurses and technicians were extremely patient with us as we wrapped our heads around Jack’s defect and the potential plans for his care.

We also had to undergo evaluation of our oldest son’s cardiac health, as well as our own. The day we brought Boone in for his echo, my husband and I felt sick with anxiety. This was obvious to the team at Sibley. The ultrasound technician, was overly accommodating, listened intently to our story. Instead of sending us home on a Friday afternoon without the results of Boone’s echo, she pulled in one of the cardiologists to evaluate and confirm there were no issues so we didn’t have to spend a weekend agonizing over the results. This small gesture meant the world to us then, and it is a solid representation of our overall experience with Sibley. They truly supported us at every turn.

In the final weeks before Jack was born, we were in close contact with Dr. Slesnick, our OB and our pediatrician. While there was a lot of uncertainty around the timeline and expectations once Jack was born, we had total confidence that our doctors at Sibley and the OB were prepared for anything. After Jack’s birth, the neonatal team closely monitored him for signs of distress, but he didn’t show any. When Dr. Samai took Jack the next day for his echo, we felt like we were holding our breath waiting for the report on how he was doing. We were relieved to learn that while the defect was still functioning as it did in utero, Jack was not showing any signs that he was struggling as a result.

Because it’s such a rare defect, it was hard to determine what to expect in the immediate hours, days and weeks ahead. Jack is regularly monitored by Sibley. Miraculously, he just celebrated his first birthday without any interventions to date. While we don’t know if Jack is going to need repairs in the future, we do know beyond a shadow of a doubt that he is in the best possible care should he need help.

When I look back on the last two and a half years in the world of heart warriors, I am eternally grateful to everyone we have built relationships with at Sibley Heart Center. They compassionately guided us through our darkest hours and built our confidence to move from shock and despair to strength, happiness, and perhaps most importantly, normalcy. They have lovingly cared for Charlotte and Jack since birth, and there is no one we would trust more to care for our children.

The most important thing I have learned through this experience, and what I want to convey most to those at the start of this journey, is that you are much stronger than you think.  The strength and resilience of your children is nothing short of incredible. I also learned that asking for and accepting help offered to you is critical. Try to find the silver lining in your dark moments. Sometimes they feel like they’re going to drown you, but a glimmer of hope can be the lifeline you need to hold onto and get you through the day. For me, Adele’s song, Hello, which came out right when Charlotte was born, originally crushed me to hear – but Thomas and I decided after hearing it for the one hundredth time in two days that this was going to be the song that he and Charlotte dance to at her wedding. So every time it comes on, while it still makes us cry, it reminds us to picture her bright future. And it doesn’t hurt to hear Charlotte, now two and a half, belting out the words with pride every time she hears it.