Owen

After having a healthy first child, my son Brendan (now 5), and a normal beginning of pregnancy with Owen—hearing at 25 weeks about his heart defect was a shock. Own was diagnosed in utero with having DORV and a large VSD at Cornell Weill hospital in New York City. The doctor assured us this was fixable and we felt pretty confident, totally ignorant of what was to come.

Owen was born on May 8, 2007 at Cornell after being induced. We expected Owen to have surgery at two days old to place a B-T shunt. The doctors realized it was more complicated than what they thought, so at two days old Owen had a cardiac cath to determine what was going on. I don't think our lives have ever been the same since that day. They explained that Owen was one in a million and was unique. He had pulmonary atresia and collaterals feeding his lungs. He had a coronary fistula supplying a large portion of his lungs. Cornell gave us no surgical options but many different outcomes none of which were good. One doctor told us he could probably die at three months because his lung pressure would change and what was coming off the coronary could result in a heart attack. another said that he could live a good amount of time but with no quality of life. We were lost and our son Brendan who couldn't wait to have a brother didn't come home like his friends' siblings.

After three unnecessary weeks in Cornell trying to improve his feedings to a level that they are not at even seven months later, we were discharged. After second opinions at CHOP and Children's Hospital Boston, we decided on the surgical options at Boston. What is so hard about this is, besides gaining weight slowly, Owen seems fine, He is happy with his saturations in the upper 80s, and we were enjoying family life.

On August 20th Owen went in for his first surgery of three surgeries. He did well, but he developed an infection and that resulted in a longer recovery time. Thanks to God he came home on September 9th with Dad. Mom came home three days earlier to send Brendan to his first day of kindergarten.

Owen is still slow to gain weight but we got to spend Christmas as a family and are thankful for that; he is scheduled for a cardiac cath on January 2nd and surgery on the 4th. It's a long road but we had to give him a chance.

February 2007 Update

Just a quick update. Owen's January surgery was postponed due to a case of RSV.  He just had  a partial Unifocalization on Friday Feb. 8th. He did very well he now has his second cath in one week scheduled for wed the 13th.  We are at Boston Children's now wish us luck.

August 2008 Update

Owen has had had two catheterizations: one in April and one in July. He is doing well, he was still very slow to gain weight so on May 28th we had a g-tube placed. He has gained 7 lbs. since then. We are going to Boston for another cath in October and then the decision for the third surgery will be made.