David

David was born on October 14, 2003, four weeks before his due date. He was 4 pounds, 11 ounces, and no problems were detected on his first day of life. In fact, as I called one family member after another, I remember my words clearly - "He's only 4 pounds 11 ounces, but he's perfect, he's perfect."

Early the next morning, David was taken for his car seat test. In Massachusetts, all preemies have to pass this test. Parents have to bring in their car seats. The preemies are hooked up to monitors for one hour while sitting in the seats, to make sure they can handle riding in one. A couple hours later, a NICU doctor came in to speak with us, and informed us that David had failed the car seat test and was now up in the NICU. His O2 sats had gone down while in the seat, and did not come back up when they took him out and laid him flat. At this time they told us it could be a heart problem, a lung problem, pneumonia, or a simple infection. They were doing more tests to see what it was.

We hung on to the hope that it was a mere infection, but a while later another doctor came into our room. As soon as he introduced himself as a cardiologist, our new life began. He told us that David had a very serious heart problem, and that he was being packed up to be sent to Children's Hospital in Boston for surgery. To this day, I can hear his words echoing in my ears - "Without surgery, his heart problem is not compatible with life." What happened over the next few hours is a blur, and all I know is that somehow, without really functioning, we stood with David in the NICU until the transport team came for him, discharged myself early from the hospital, raced home to pack suitcases, and drove into Boston.

For the next 2 weeks we lived at the hospital with David, while he was stabilized and while he endured test after test. We found out that his main heart defects were complex Tetralogy of Fallot and Pulmonary Atresia. We had quite a few scares, too many to write about at this time. Countless bradycardia and apnea episodes, sats dropping, and so on. But, it turned out they did not want to risk surgery at this time, due to David's small size, age, etc. As soon as David was safe to go home, they sent him home on a "feed and grow" program, and hoped he would last many months before needing his first surgery.

Before we were released, however, we got another diagnosis, of 22q11 deletion, a.k.a. DiGeorge Syndrome. We were crushed, but as this is a heart defect site, I won't go into detail about David's DiGeorge issues. Or maybe I will add them in later.

At any rate, we went home for a few weeks, with outpatient appointments and a visiting nurse. But David's sats were trending down, so his first open-heart surgery was scheduled for December 2nd.

David was amazingly strong during his surgery and recovery, especially for such a little peanut. He received an RV-PA (Right Ventricle to Pulmonary Artery) homograft/conduit during this surgery. His recovery went fairly well, with just a few set-backs while in the CICU. Again, we were in the hospital for 2 weeks. However, we were home in time for Christmas, and were thrilled to be able to spend our first Christmas together as a family.

Again, we found at outpatient appointments that David's sats were trending down. Therefore, in mid-February, he had a cardiac catheterization. During the cath, they dilated his pulmonary arteries and put 2 coils in some collaterals he had. Unfortunately, there was a nested group of collaterals, as well as a few other separate collaterals, all of which were too short and tangled to get coiled. Which brought us to our next step.

On March 29th, David had another surgery, in order to ligate the collaterals that had been unable to be coiled in the cath lab. His surgeon was able to ligate the large tangled nest of them, but as he began to ligate the other separate ones, David's SATs dropped to 40, so he did not go any further. These collaterals will be watched. They are hoping that they will just get smaller and won't be an issue for David, but it's possible that they will need to be dealt with at a later date. David recovered very well from this surgery, and we were home 6 days later. His sats are now around 80.

Our next step will be another cath, to see how things look and to do some more dilating of the pulmonary arteries. David's cardiologist hopes to wait until September to do the cath, but it will depend on David's sats. About 4-6 weeks after the cath, David will have another open-heart surgery. They will replace his conduit then (which he will have outgrown). They are also hoping to be able to close his VSD during that same surgery, but it will depend on how much bigger and better his pulmonary arteries have gotten at that point. If the flow is still not great, they will have to close the VSD in a separate surgery at a later time.

After those surgeries later this year, David will still need more surgeries as he gets older, to replace his conduits as he outgrows them.

We are so very grateful to the entire staff at Children's Hospital Boston, who have worked tirelessly to save David's life?especially his cardiac surgeon, Dr. John Mayer, and his cardiologist, Dr. Peter Lang.

David is a happy baby that gives us lots of smiles. He enjoys his playmat, his bouncy seat, his swing, reading books, and looking at toys. He is working hard in Early Intervention to catch up on his delays and his DiGeorge issues. He has dozens and dozens of people who love him and who are pulling for him. He has been very brave and strong in dealing with his heart problems, and we know he will deal with his DiGeorge issues the same way, throughout his life. And he has 2 parents who waited a very long time for him, and love him more than he can even imagine.