Dear parent of a child born with a severe congenital heart defect,

I should begin by saying that although having a child with a life-threatening congenital heart defect is something that I would never wish upon any family, it has affected our family in the most amazing and wonderful ways.

Our son, Jack, was born with tetralogy of fallot with pulmonary atresia and multiple aorta-pulmonary collateral arteries. He was diagnosed in utero and followed by Mary Donofrio, MD throughout my pregnancy. After Jack was born and subsequently transferred via helicopter to Children's National, Dr. Donofrio was able to then get a better idea of the nature of Jack's heart defect. He was born with the "typical" characteristics of tetralogy of fallot, but in addition he had very underdeveloped and almost thread-like pulmonary arteries. Because his pulmonary arteries could not sufficiently deliver blood to his lungs, several collateral arteries had developed branching off of his aorta, which provided both oxygenated and deoxygenated blood to his lungs. Ironically, it was because of these collateral arteries that Jack was able to come home to grow after only three days in the hospital.

At five weeks of age Jack had his first cardiac catheterization and then two weeks later, at 7 weeks old, he underwent his first open heart surgery. I remember seeing Jack for the first time after surgery. He was swollen and had tubes and wires covering much of his body. Despite the way he looked, it felt so wonderful to be able to touch his little arm and know that he had made it! Although he was still in critical condition, we were just so relieved. Every day following surgery, more tubes and wires were removed and our son began acting more and more like himself. Jack's recovery went smoothly and he was discharged and able to go home just six days later. A little less than three months later Jack underwent his second open heart surgery. He once again recovered quickly and came home after only four days, which was amazing. Since his surgeries Jack has had several cardiac catheterization procedures, five total, to widen his pulmonary arteries and his conduit.

Our team at Children's National, Dr. Donofrio, Michael Slack, MD, and Richard Jonas, MD, is without a doubt the reason that Jack has done as well as he has. They balance what is best for Jack at the best time and we could not imagine anyone else taking better care of our son's heart. There will come a time, most likely sooner rather than later, when Jack will need another open heart surgery to replace his conduit for a larger one, and although we wish it wasn't the case, we are so thankful that 'our team' will be there to do it.

Raising a child with a congenital heart defect presents a parent with an enormous amount of fear and worry about the future. But, it is also the most wonderful journey you could ever take. Jack is now a feisty, energetic three-year-old boy and you would never know his heart was anything but normal unless you were to see his scar. Our son is a reminder of how precious and amazing life is and how lucky we are to have him in our lives. Every night when we put Jack to bed I kiss his head and then I kiss his special heart and am so thankful for everyday we get to spend with him.

Good luck on this journey and I wish nothing but the best for your child and his or her special heart.

Sincerely, 

Jack's parents, Kelly and Wes

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Cardiovascular (heart) conditions and diseases - Letters