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Sebastian, born 2001

My pregnancy with Sebastian was such a wonderful experience. I was the happiest pregnant woman I knew! Sebastian was born via c-section (due to being in a breech position) at 39 weeks. He was beautiful. He scored 9/9 on his Apgar tests and had the lungs of a champion when he joined the world. He was born very early in the morning and it was evening before the truth of his defect was discovered. His nurse came in and took him for a hearing test. Until then we had all been resting in a dimly lit room, Sebastian in his bassinet. The nurse immediately came back in to tell us he was a little blue but not to worry, that this was typical of c-section babies who don't always get all the fluid out of their lungs. But we soon discovered it was not that.

 

The pediatrician on call came in and told me they were fairly certain that Sebastian had a heart defect but they didn't know anymore and were awaiting doctors from Boston Children's Hospital to come get him. It was definitely a horrible blow to what had been, just moments before, a new happy family.

 

Once in Boston, he was diagnosed with Pulmonary Atresia with Intact Ventricular Septum. His first surgery occurred on September 11, 2001. And while the whole world was obsessed with what was occurring in our country, my whole world was enduring his first open heart surgery and showed us that strength isn't about size!

 

He completed all the steps in his 3-step Fontan surgery and is doing beautifully. He amazes me everyday with his sweetness and his humor and of course his strength. It wasn't an easy road seeing such a fighter in such a tiny body. It's hard to see the things they must go through and the road to recovery they must face but I always told myself, "If he can go through it, I can do whatever he needs to help him to survive." And, for this, he is my hero.

 

Story by Sebastian's mom, Marcy - New Hampshire