Whisper's Story: Parent's Letter Project Hypoplastic right ventricle- Whisper’s mom

I was 24-weeks pregnant when we were sent to see a cardiologist at Children's National, and that will be the day I never forget. I was told by the cardiologist that our baby had a severe heart defect. At first my husband and I sat there and just listened...until I asked if it was life threatening. I guess I was so sure that there wasn't going to be anything wrong, especially since this was our sixth child and all the others were perfect. All our early detection tests came back normal. Then the words "severe heart defect" came rushing back and it took all of me to hold back my tears. Not only did we find out about the heart defect, but then I found out that the umbilical cord didn't have all three vessels. It was a two vessel cord which suggested that there may be an abnormality. I was so crushed, even though it made sense. This doesn't mean it will happen to you, but it happened to me and I had never heard of it. "Whisper" had five things that made up her heart defect. Everything else about Whisper was great- her only issue was her heart.

Really all I was interested in knowing was if our little girl would be able to live, and if so by what means. What kind of life would she have? There are so many questions that race to the forefront but so many that come after the visit. I recall our cardiologist, Mary Donofrio, MD, telling me not to search online as it would be difficult to apply to her special heart and may bring up the worst case scenarios. She also told me that she was there to help fix our little girl. Then she told us that we had to decide where we would like our daughter to be treated: Children's National or another local hospital, which was our original plan. In all actuality it was a no brainer as to where our daughter would be, especially after she told us all the pros of Children's and its surgeons. I knew walking out of there where our little girl would be treated.

Dr. Donofrio told us that as soon as our baby was born she would have to be transported to Children's National right away and that surgery would take place about three days after Whisper's birth. I couldn't imagine in my wildest dreams what this was going to be like. I cried a lot! I was seen by Dr. Donofrio each month until delivery. It seemed like there were so many appointments between regular prenatal checkups and fetal cardiac appointments because given my age, we were high-risk. I remember going to so many appointments and the best visits were the ones that we had with Children's. I do have to prepare you and tell you that your visits will not just be a 30 min. Visits take a while.

My delivery was scheduled for 39 weeks per Dr. Donofrio. Since we knew this ahead of time we were able to plan how we were going to do things during the surgery and the days and weeks after...but nothing I initially thought was how it went. I thought we would deliver and I would go back and forth very easily between home and hospital but once I had Whisper, I didn't want to leave her. We had five other children at home and we couldn't forget about them either. They were such great big brothers and sisters and held things together great! 

I am so glad that we had our daughter taken care of by everyone at Children's. The anesthesiologists, the surgeon, Pranava Sinha, MD, and surgical team, Whisper's cardiologist Dr. Donofrio, and all the nurses in Cardiac ICU were wonderful. They were so helpful and caring especially since the surgery was the longest and most emotional day of my life. Whisper was in the hospital for a month and a half after her heart surgery. She looked good after birth with the prostaglandin. The heart surgery was done when she was six days old. She was a trooper! She didn't open her eyes at all until the day before surgery and I took that as a sign that everything was going to be ok! She pulled through and when I saw her, nothing prepared me for how she would look. Going from this 6-pound baby to looking like a 12-pound baby is a big difference.

This is going to be a scary time for you, but know that your child is in great hands and is a blessing from God. The nurses take great care of them even when you are unable to be by the bedside. We were there each day or evening and during the hours I wasn't there, I called three times a day to get updates. I thought I was getting on their nerves, and maybe I was, but I would do it all over again. In another month, Whisper will be 20-months old and will be getting ready to have her third open heart surgery, the "Fontan." We feel she will pull through this one just fine. I am sure that she will get through this and be back to running, playing, singing, and dancing. She loves to dance and run. I can't wait for her to be doing this again after her surgery and healing time.

I hope if anything, you find the positive in your situation and believe in your child's doctors and team at Children's National. They have been there for us through so much and we couldn't have asked for a better experience than we had during this life-changing event. This is something that will change your life and maybe your outlook on life, but just remember to also show those caring for your child the respect and kindness they deserve. They work very hard to care for our children and they are trying to make this an easier situation.

Sincerely,

Whisper's mom, Carrie

Treatment Team

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