Miles
Miles was born with supra-cardiac total anomalous pulmonary venous return.
Miles was born August 19, 2024, at 38 weeks. I had a normal pregnancy and no red flags at his anatomy scan or his growth scan. My labor with him was quick and easy, but once he was born, we knew instantly something was wrong. There was no cry, and he came out cyanotic and floppy. They originally thought he was having respiratory issues, and he was life-flighted to the children’s hospital a few hours after birth, where they decided to do an echocardiogram and discovered he had supra-cardiac total anomalous pulmonary venous return. I was told this heart defect is commonly found after birth as it is hard to see on ultrasound. He had open-heart surgery at 3 days old to repair his defect. He did well during surgery and his recovery couldn’t have gone any better either. He was discharged home after 2 weeks. We see his cardiologist every few months for checkup echos and EKG’s. His repair still looks good, but now he is in a heart block which we are meeting with a specialist and monitoring. He is now 17 months old, and you would not be able to tell he has a heart defect unless you saw the scar on his chest. We are grateful every day he is here with us. Miles, along with all the other CHD babies, are among some of the bravest souls.
-Miles' mom, January 2026-
Cate
Cate was born with hypoplastic left heart syndrome (HLHS).
We discovered that our first baby, Cate, would be born with Hypoplastic Left Heart Syndrome (HLHS) during my 20-week anatomy scan. While I was still pregnant, we sought several opinions regarding her surgical path. During this time, we met with the Biventricular (BiV) Repair Program at Boston Children's Hospital (BCH). They indicated that based on the fetal echo images, Cate's anatomy might support a two or one-and-a-half ventricle palliation rather than the traditional single-ventricle Fontan path. Based on this, we elected to have Cate’s surgical care managed at BCH.
Cate was born in August 2021 and faced severe complications immediately following birth. She underwent an emergency catheterization at 18 hours old to open her PDA and received the standard Norwood surgery at six days old. We were able to take her home at five weeks old before returning to Boston in February 2022 for her "Super Glenn" surgery. This procedure aimed to grow her left ventricle using her own blood flow, with the hope it would eventually support a 1.5 or 2 ventricle palliation.
Following many appointments and therapies, we returned to Boston in March 2023 for her third surgery. Testing revealed that while her left side had grown, it could not support a full two-ventricle solution. Instead, her surgeon performed a "Reverse Double Switch" surgery; Cate was only the 13th child to ever receive this procedure. She responded beautifully, now has full oxygen saturations, and is growing into a spunky, sassy little lady.
Cate receives excellent care at home in Norfolk, VA, through her CHKD cardiologists and therapists who collaborate closely with her Boston team. Since her 2023 surgery, Cate had one additional catheterization in 2024, with another planned for June of this year. Today, Cate is a very proud big sister to her brother, Henry, and baby sister, Lucy.
We would love to be a resource for any CHD family. If anyone could benefit from hearing about our experience with the BCH BiV program, please reach out to Miles of Love to get connected with us.
-Cate's mom, February 2026-
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