Little Hearts

Sean

On August 2, 2006 Sean (HLHS) and his twin sister, Delaney were born. Sean had the Norwood and Glenn but sadly passed away on February 24, 2007. The following speech is from Sean's pediatric cardiologist at his funeral:

"I had the privilege of being Sean's cardiologist for most of his life. I know that many of you here today never had the chance to meet him, partly because he spent so much of his time with us at the Children's Hospital, and I suspect that in many ways his complex heart problem and his confusing medical course made it difficult for you to understand what he was going through and what his parents went through. They have asked me to speak to you today, to try to describe Sean's condition, to let you know about the huge challenges he faced from the moment of his diagnosis, and to give you some sense of how he fought against long odds right from the start.

Before I begin I would like to point out that while I am the one up here speaking to you, I am only part of a very large team of caring professionals from the Children's Hospital. So many people provided extraordinary and loving care for this child, from the womb and beyond: my colleagues in pediatric cardiology, the neonatal unit and the ICU; his surgeon, Dr. Jonathan Chen who had hoped to be here today but is on call at the hospital; his perfusionists and ICU nurses - the people who literally held his life in their hands over the last weeks. They are the ones who truly deserve our thanks and appreciation for their care. A number of them are here today, which says more about them than I ever could. And his pediatrician, Dr. Evelyn Casas, who took such good care of him during his months at home.

As many of you know, Sean's heart condition was diagnosed in the womb. In basic terms, his left ventricle, the major pumping chamber to the body, stopped growing midway through the pregnancy. This terrible condition happens with a certain frequency, and we typically have no idea why. Fortunately, his mother was being monitored carefully during the pregnancy. The problem was discovered early on by her obstetrician, and she was referred to my colleagues at Columbia. If this had not been found beforehand and she had delivered at Stamford as planned, Sean would probably have not survived for more than a few hours. His condition was so severe that Dr. Kleinman, my colleague who assessed him before birth, was concerned that he wouldn't even make it through the pregnancy. He prepared the Marshes for that possibility and started Victoria on medication to try to help Sean's heart, even before he was born. She told me a few months later that Sean survived the pregnancy just so his sister could be born. That may have been our first indication of how tough he really was.

He was born 4 weeks early, just under 6 lbs, on a Wednesday morning. By Wednesday afternoon, he was undergoing an emergency cardiac catheterization procedure to create an opening in the upper chambers of his heart, so that the oxygenated blood from his lungs could drain into his body. This was just a temporary fix, and when he was 6 days old, Dr. Chen performed his first major heart operation, which was supposed to be followed by two more operations over the next 18 months.

These would convert his one strong pumping chamber, the right ventricle, which normally pumps blood out to the lungs, into the ventricle which pumps in the body, to take the place of his underdeveloped left ventricle. This may seem like a backwards way of fixing things. Why not just have the surgeon enlarge and fix his small ventricle so he could use it? It is just not that simple. In spite of all the advances in cardiac surgery over the years, our surgeons still can't make a ventricle.

Only God can do that.

It was a very long operation and Sean was quite sick afterwards. As serious as it was, Dr. Chen reassured his parents that Sean would pull through, and he gradually improved over the following days. Just when it looked like he was getting ready to be discharged at three weeks of age, he developed his first setback, a blockage in his intestine, which was probably related to how sick he was after his surgery. This kept him at the medical center for an additional three weeks. followed by a transition week at Stamford Hospital, before he finally came home, just before he was two months old. He weighed exactly 7 lb 2 oz, the size of a newborn.

He was such a serious baby when he arrived home - I think it was just that he never had much to smile about in the hospital - because gradually over his first month at home he became happier and began to interact more and more with his parents and with the rest of us. I so clearly recall the first time I was able to get a smile out of him in my office. It really felt like a major accomplishment, and I was very proud to get it!

He went on to have some of the normal pediatric problems over the next month or so - I remember one phone call about a rash 'all over his body' - like any other kid. Of course, he was different, because we had to monitor his oxygen levels, which were lower than average, and his weight gain was slow. Still, he was home for Thanksgiving and Christmas, with only a brief overnight stay in the hospital in early December for another catheterization to check his heart, which was in excellent shape.

He came back to Children's Hospital in late January for the second stage of his surgical repair, which would start to separate the red and blue blood flow, with the goal of making him pinker with better oxygen levels. He was nearly six months and he had doubled his weight since arriving home.

The surgery was a success, and he breezed through the recovery, to the point that we were planned to send him home just 5 days later when something completely unexpected and devastating happened. He had a heart attack caused by a blockage to his coronary artery. This severely damaged the muscle of his one working ventricle, and it quickly became obvious that his heart could not do the work needed to keep him alive. Dr. Chen came in - in the middle of the night - and placed him on life support, using essentially the same machine we use during heart surgery to pump blood to the body. Sean's only chance was for a heart transplant, and he went right to the top of the waiting list, but finding little hearts is always difficult. As Victoria said to me, some other family has to go through a terrible loss to provide the gift of a heart.

What followed was a month-long marathon. The life supporting ECMO machinery is not easy on the system, and complications are frequent. In fact it is unusual to go two weeks without a life threatening problem. We were all amazed at how well Sean tolerated this. He was so vigorous, he had to be heavily sedated, and even then, he would react to us, moving his arms and legs and turning to out voices. He was just determined to wait for that heart, which finally arrived after 29 days on the machine.

He went for his transplant surgery, which was predictably difficult. The transplanted heart worked well, but the long weeks on ECMO had been more damaging to Sean than we realized, and all his other organs failed. He never woke up from the operation, and he never suffered during the long last night.

In all Sean spent nearly half of his life with us at the Children's Hospital, but he was never an invalid. His feisty spirit came through day after day, and I think all of us who cared for him will remember him that way.

Even though his parents asked me to speak about Sean, I would remiss in closing if I didn't say a few words about the two of them. I do not believe there is anyting more overwhelming for parents than to be faced with a situation like this. Many families just come unglued in the process. We see it in the ICU - tensions mount and family visits become few and far between.

But these two were at Sean's bedside virtually the entire time, alternating shifts, keeping his nurses and perfusionists company, even in the midst of the other family crisis, when Patrick shuttle back and forth between two ICU's - one for his father and the other for his son. I think the only time when one of them was not there was during the services for Sean's grandfather, and even then, they delegated an aunt to sit at his bedside and keep him company.

The two of you approached each new challenge to his health with calm and courage. You were true partners in his care with us, and in doing so, you made our jobs so much easier and fulfilling. Patrick, your dry dense of humor kept us laughing even in the worst of times, and Victoria, your 2000 plus cranes, which you labored over with assistance from some of your friends, were an inspiration. I think there are at least 1000 or so still flying in the parent's lounge!

Finally, and most importantly, you never gave up on Sean. We didn't give up on Sean, and I don't think Sean gave up, either. When you look back on this long journey, you should know in you hearts that you did the right thing for this little boy, every step of the way.

God bless the two of you and God bless your family."

Written by Michael S. Snyder, MD of Columbia Presbyterian in NY
March 3, 2007

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