Baby James was born on July 19th, 2021 weighing 6 pounds 15 oz and 19 inches. His older brother Joseph was so excited to welcome home his baby brother.

His CHD, Tetralogy of Fallot, was unknown until after birth. The pediatrician heard an unusual heart murmur and James did an EKG/ Echocardiogram while in the hospital. After hearing the news of his heart defect we were upset, depressed and didn't know what to do or think. I started researching hospitals and surgeons for his open heart surgery. James was observed for one night in the NICU. Luckily we were able to go home after.

We monitored his oxygen multiple times every day. On August 18th, James' oxygen levels decreased to the 60s which we had never seen. We rushed to Morgan Stanley children's hospital in NYC to get him checked out that afternoon. He had surgery the next morning for a BT shunt which would allow more time for his repair. Dr. Kalfa was the surgeon. We were told he would need a second open heart surgery around six months old which was a shock. 

For almost 2 weeks we could not hold him because he was on the ventilator and hooked up to many IVs/ machines to monitor him. It was a hard and stressful time. After 2.5 weeks in the hospital we finally went home.

James came home with a feeding tube. This was a learning process because we needed to have equipment and learn how to insert his feeding tube. James did physical therapy, feeding therapy, cranio sacral therapy and got his tongue/ cheek ties clipped to help him wean the tube and grow stronger. In mid October he was able to fully wean the tube. Weeks later James had a mild case of RSV, luckily he was fine. 


About a month later in November we picked a date for the surgery. January 24, 2022. We had pre-op on January 19th and all went well until we found out that James' had COVID-19. He was asymptomatic. Everyone else tested negative.


His repair surgery for TOF finally came on February 1st. Dr. Kalfa was able to save his pulmonary valve which we were hoping for. We saw him in the late afternoon after his surgery. Hours later, James had a complication in which there were blood clots near his heart. The surgeon needed to open up his chest at bedside. We are so incredibly thankful the surgeon was in the building to save James. Six days later we were able to go home.


As you can see we had a long journey. For the rest of his life, James will need to be seen by a cardiologist and he will always have TOF. There is a chance he will need a procedure or surgery when he's older. For now we are so grateful for the medical teams who saved his life. We thank God he is doing well while continuing to grow stronger. We're also thankful for our family and friends who are by our side. 

Raising funds for congenital heart defect (CHD) research is not only critically important to all babies born with, and children and adults living with CHDs, it is also personally meaningful to us.

By donating to help us reach our fundraising goal, you’re helping to fund the most promising research into CHDs - America’s most common birth defect.

Together we can make a life-saving difference! Thank you in advance for your support.