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-
Violet
Violet was born with Atypical Ebstein's Anomaly and Severe Pulmonary Stenosis.
We found out at 29 weeks pregnant something was wrong with our little girl's heart. She was diagnosed with Atypical Ebstein's Anomaly with severe tricuspid regurgitation and later severe Pulmonary Stenosis. We had several echocardiograms and wound up delivering over 8 hours away at Mayo Clinic in Rochester, MN. Violet had a transcatheter balloon procedure done at 1 day old and a PDA stent placed at 5 days old.
Violet was discharged after 8 days to go home with outpatient monitoring. We get weekly echocardiograms and EKGs. Her right side of the heart is under increased pressure, so we know we are still at the beginning of her medical journey. There is a need for another catheter procedure on her pulmonary stenosis within the next few weeks, so we will be returning to Mayo Clinic. She will also need the Cone surgery done sometime between ages 2–5, possibly sooner, to correct her tricuspid valve.
-Violet's mom, March 2026-
Daphne
Daphne was born with Tetralogy of Fallot.
Daphne is Brian and my second child, so everything revolving around pregnancy was familiar to us until I had my 20-week anatomy scan. I had been referred to Maternal Fetal Medicine due to me taking sertraline for my anxiety disorder. During the scan, we could tell that something was off when the tech got to the heart. Her quiet concern made us worry, and even more so when she said she needed to ask the doctor to come in and take better pictures since she was having a hard time doing so. As soon as he finished, he dropped a bomb on us. Our little baby girl had what's called Tetralogy of Fallot. His next sentence was reassurance that it was something that was fixable, but at the same time, there was no way to tell how complex her cardiac anatomy would be until further scans were done. That afternoon was spent doing a lot of Googling and trying not to think too hard about what this could mean for us. We needed more information. After that, we met with the Pediatric Cardiologist for the first time. He was strangely optimistic for such a terrifying situation. He explained that TOF is typically made up of four different defects: Pulmonary Atresia, Overriding Aorta, Right Ventricular Hypertrophy, and a Ventricular Septal Defect. I couldn't understand how baby girl's heart was even working at this point, but he assured us that it was something that could be fixed.
We had to have 2 more scans there before little Daphne was born, and each time we went in thinking there would be a better idea of the whole picture, but left feeling disappointed that we needed to wait some more. This was the first time it felt like the goal posts were being moved away from us. I was induced and when she made her appearance, she needed help breathing but was otherwise great. Because of the difficulty with breathing, she did need to stay in the NICU. This was foreign to Brian and me. The first time we saw her in her little NICU bubble, I sobbed. After the first day, she was allowed to eat some of my colostrum. I FED HER. Cried again. Three days in, they told us that she would need to be transferred to Boston Children's Hospital. Due to the complexity of her defects, they would be the ones to treat her in the long run, and they wanted to do their own CT scans and Lung Perfusion scans, etc.
We watched our newborn be taken away by the EMT transport team, and then had to walk out of the hospital without our baby. I didn't know how to go home without my baby, but we couldn't just follow her to Boston because we had her 5-year-old brother at home. After a long two and a half weeks, we were finally able to bring her home, and her brother could meet her for the first time. We wouldn't need to go back to Boston until she was two months old.
Daphne met with her new cardiologist a couple of times before we were scheduled to have return scans and testing in Boston. It was just a day trip! Until it wasn't. They wanted her admitted because they didn't like where her Oxygen levels would sit. We checked it daily at home per the directions, but while she was having her tests, they'd sink too low for longer than they liked. That week she had her first cardiac catheter procedure to finally fully map out everything and make a final plan for her. There were the goalposts! Yes and no. Two days following that procedure, she underwent her first open-heart surgery. They found that Daphne didn't have a pulmonary artery, so they made her one. Her MAPCAS were relocated, and for the first time since she was born, I saw her oxygen hit 95%. Nothing prepares you for your baby having to go through surgery like this. She came back to us sedated, intubated, and with a patch covering the hole they left open to accommodate for swelling. There were so many wires. But she was okay, and she was getting such great oxygen!
She spent four weeks in the hospital before coming home to us again.
Since then, she has had four more cardiac catheter procedures to dilate the MAPCAS and help them grow with her body. She spent her first Christmas in the hospital with the flu. Then, two days before her first birthday, she would have surgery again. This time they will do more reconstruction of the MAPCAS, and if everything looks good, then they will replace the artificial conduit that acts as the pulmonary artery and close the VSD. We've been told that she will need the artificial conduit replaced every ten years or so, but that she should live a very normal life otherwise. We are so grateful for the care she gets and love our little heart warrior princess.
-Daphne's mom, April 2026-
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