At David's 1st birthday party, more than an 100 guests showed with gifts and smiles. It was a touching and memorable day celebrating life. David is my miracle boy who's life has and is still touching so many others. He has certainly taught me patience, fear, joy, sadness, and love in ways I never knew before. We savor every milestone and no longer take life for granted. His smile alone makes his story so worth the difficult beginning we endured.

My fourth child and only boy, David, was diagnosed with a congenital heart defect in utero, hypoplastic right heart / pulmonary atresia with intact ventricular septum. Learning of his heart defect was one of the most difficult days of my life. We were sent from one doctor to another many of whom were recommending termination. They said things like his life would be so difficult, he would have to have multiple surgeries to survive, and if he survives the surgeries there is a high risk of stroke. His life would never be normal- "they" said.

But one doctor, our perinatal cardiologist, said the right thing..... "You want to know you have done all you can for your child." That is so true. Isn't that what we want for all our children?

David was born on September 27, 2002 at St. Joseph's Hospital in Tampa. We were all ready for him. Just according to the plan we made, he was immediately rushed out of the room to the NICU, stabilized, baptized, and prepared to be transported across the street to the Children's Hospital Heart Center. My husband stayed by David's side. Everyone rushed out with the baby and I was quickly left alone. For me this was the hardest part. One nurse took a Polaroid picture of David for me. I planned for my parents to watch my other children and told family and friends that we would call with an update as soon as we knew something. Well, I should have planned for someone to stay by my side. For all I did was worry alone. Flowers and such were sent to the baby's room. I felt no one at the Women's center knew I had a baby. All I had was a Polaroid picture. When I finally could see him, I worried the nurses knew my baby better than I. I still feel selfish for worrying about me. But I wanted to share this part of the story- because it's not easy. At times, it was really hard to have a child like David.

David was put on prostiglandin immediately after birth to keep the hole between the right and left atriums in the heart open in order to survive. He had a balloon septostomy in the cath lab at 1 day and a "BT shunt" surgery at 5 days. He came home 3 weeks later on a feeding tube. He was a "blue baby" because the level of oxygen in his blood was kept low. He just needed to grow a little to be prepared for his next surgery. David developed severe reflux, so Hubby and I were on 24 hour shifts to feed and make sure he didn't aspirate. He was suppose to eat every 3 hours. By the time we got the 60 cc's in him and cleaned up the vomit, it would be time to feed him again. I recall being VERY sleep deprived. (Plus my 3 other children and their school and stuff. My husband was actually trying to work at the time to pay for all of this. How did we do it?)

About this time, we learned that David has a genetic disorder, DiGeorge Syndrome. This syndrome is caused by a deletion on the 11th gene of the 22nd chromosone. (AKA: VCFS and 22q11) DiGeorge has caused David to have low immunity (due to no visible thymus), hypocalcemia, and palate issues (causing the reflux and speech delays).

David had his "Glenn" surgery at 4 months old. After this surgery, he developed a (relatively) common complication, chylothorax effusions (fluid leakage in chest). Many children who have this complication go on diuretics and a no fat diet for 6 weeks. But David's effusions persisted. He battled chronic effusions causing 10 more hospitalizations with chest tubes and procedures. He had collateral coils placed in his chest (in the cath lab) at 8 months old, a "Thoracic Duct Ligation" surgery at 11 months, and Octreotide injections at 11 months. After 15+ months, the effusions finally stop leaking and we slowly reintroduced fat into his system. Now he is on a regular diet. And he loves to eat- macaroni and cheese!

It was a very stressful time. We worried about reflux, his heart, infections, calcium levels, ...etc. (Turns out calcium is pretty important- who knew?) But he did get stronger and feedings gradually got better. His effusions got better. As he started holding up his head, sitting up, and later walking (- mostly walking!), his overall health became better and better.

It's hard to believe we survive those first few months, but we did. David is now 2 years old and you should see him now! He is running everywhere and is into everything. He loves to "ride" his tricycle (Can't quite reach the pedals). He dances to the Wiggles, throws balls, and plays with his trains (ooo! ooo!) We just went to the farm and now he LOVES to say "MOO" with his lips sticking far out -too cute. He is an amazing little boy who loves life and he's a real inspiration. I can't imagine life without him.

He will have the third scheduled and hopefully final heart surgery this spring, the Fontan. David has speech delays, but he signs about 25+ words and is starting to vocalize words. For the past 6 months, he's been in catch-up mode developmentally, making up for lost time. He receives PT, OT, speech, and an EI teacher.

David has 3 older sisters, now ages 5, 11, and 13. They handled this amazingly. I constantly worried about their sacrificing my time and energy as well as extra-curricular activities. The 5 year old had some problems with jealousy, but she really handled everything well. My older girls became more responsible and really impressed me!

David is my miracle child. He is a young boy who is battling a giant. He has touched so many people lives including mine- so deeply. And he's such a cutie too!


Editor's note: David faced his last battle in July of 2006, when complications arose during recovery from his Fontan surgery. His loss was devastating to his family, and his "heart" community. We miss this little warrior, intensely.