Isabelle Faith, born 2012On March 5, 2012 at our 17 week ultrasound, our baby was diagnosed with HLHS. We were told that without surgical intervention, our baby would not live. I can still hear the doctor who said those words to me. I cried tears I never knew I had. We were politely escorted out the back door after a quick amnio was done.
What is Hypoplastic Left Heart Syndrome? We ended up in our future pediatric cardiologist’s office the next day and I was reassured that nothing I did made this happen. Her little heart just didn’t form the way it was supposed to. I remember the drawing looked like a cayenne pepper.
Isabelle Faith was born on August 1 at the Brigham and Women’s hospital in Boston. We tried to have a natural childbirth but she wasn’t having any part of it so I ended up with another c-section. When I heard her cry for the first time, tears ran down my cheeks and I whispered, “You yell, yell as loud as you can!” She was beautiful. I got to hold her for a few minutes and then they took her to the NICU.
She was scheduled to head over to Children’s shortly thereafter. I saw her before she was wheeled over, and she looked so beautiful I just wanted to hold her again. I carried her to the OR for her Norwood. I cried all the way down, my husband crying with me as we handed her over to Dr. Emani. A little over 4 hours later, he came out with a smile and told us how well she did. He also told us that her aortic arch was the smallest one he had ever seen in his career. Very pleased, we anxiously waited until we could go in to see her.
We were in the ICU for a few days, on the floor by day 5 and we went home a week or so after that. Interstage was marked by hospital stays and feeding issues. We went home without an NG tube, had one put in at the end of September, took it out in October and we were back at Children’s before Halloween. After 4 months of feeding hell we were referred to a GI specialist who reassured me that no, I wasn’t crazy and yes, some of these cardiac babies are tough eaters for good reason. A G tube was placed right before Christmas and then we waited as plans for the Glenn began to unfold.
January 14th would be the day, with a cath a few days before. She sailed through her Glenn with some headaches and a little congestion. We were very happy to see interstage go, and we are looking forward to seeing where we land next. Isabelle is a happy, smiley baby who is full of love and a joy of life. She truly enjoys every moment being with us and I am so grateful we have been blessed with her.
Story by Isabelle’s mom, Elissa - Massachusetts
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