Saving Little Hearts

My wife and I had our first child on December 12, 2005 in Knoxville, Tennessee. We experienced all of the emotions that every new parent goes through including the joy of having a beautiful baby boy, providing a grandchild for our parents, looking at the miracle of life, and being scared to death because we just realized that he is finally here and it is up to us to take care of his every need!

Wow, if that was not enough, just imagine the thought of your new born son being taken away to the Neonatal Intensive Care Unit (NICU) at the hospital because he has been diagnosed with a life threatening condition called Hypo-plastic Left Heart Syndrome (HLHS). This condition is considered one of the most serious congenital heart defects that a baby can have and a statistically rare form of a heart defect.

My wife had a pretty good pregnancy throughout the first five months, except for the morning sickness that actually occurred in the evening. Other than that, she did very well! It was at our five month check up when our world was changed forever. The excitement of finding out the sex of our baby was quickly overshadowed by the frightening news that our OB/GYN could not see all of the baby’s heart on the ultrasound and he had some concern. We credit our OB/GYN (Dr. Steven McClees) for being thorough during his review and bringing this matter to our attention. We were then referred to a specialist to learn the fate of our precious unborn baby.

Our absolute worst fears became a reality on the very same day that we were overjoyed due to finding out that we were having a son. The specialist confirmed that the heart of our baby had not developed properly and this was considered a life threatening diagnosis. We were then referred to a pediatric cardiologist at the East Tennessee Children’s Hospital for further testing. We hoped that this was all a huge mistake and there was some explanation for what was going on, however, that was not the case. Dr. Yvonne Bremer officially diagnosed our unborn son with HLHS at five months into our pregnancy.

When a baby is born with HLHS there are only two options in order to save the life of the baby. The first option is to have a heart transplant, but a lot of babies pass away while waiting on a heart to be donated. The second option is to have a series of three open heart surgeries that start with the first surgery at just a few days old. The surgeries have only been available for the treatment of this condition for about twenty years.

There is no guarantee that every child will survive the surgeries, but it gives hope to so many children that in the past would have just died without this intervention. When a child is born with HLHS, this condition is not compatible with life outside of the womb without treatment such as a heart transplant or the open heart surgeries. In the case of our son, the left side of his heart did not form properly.

The good news was that we had four more months to prepare for this and the bad news was that we had four more months to worry about this. I must give credit to my wife for holding up incredibly well during this period because we knew that if she became overly stressed out that it could potentially cause additional problems. As we started to cope with the devastating news, we decided that we had only one choice and that was to find our son the best medical care available.

Throughout much prayer, research, conversations with other families, and totally educating ourselves about this condition, the decision was made to seek what we considered to be the best surgeon and hospital available. We decided to send our son to the Children’s Hospital of Philadelphia (CHOP) in Philadelphia, Pennsylvania to have the surgeries that was required to save his life. We selected a surgeon by the name of Dr. Thomas Spray, who practices at CHOP and is considered one of the best in the world for these types of surgical repairs.

Back to December 12, 2005, when we delivered our son he looked perfectly healthy on the outside, but we knew the condition of his heart required immediate attention. We named our son Reed Andrew and he was definitely our pride and joy! Due to his life threatening condition, he was taken to the NICU for evaluation and monitoring. Reed was quickly placed on medication to keep his heart functioning properly and to basically save his life until the first surgery was performed.

Since this surgery was to be performed shortly after he was born, my wife was only able to hold our son one time before he was transported to Philadelphia. On the following day after he was born, Reed was transported to CHOP by a medical aircraft that came after him. I was able to fly with the transport team to Philadelphia, but since my wife had a C-section, she was still hospitalized and could not come until four days later.

It was very difficult for both of us to be separated during this process and for my wife not to be with her newborn son as he awaited his surgery. Due to the seriousness of the surgery, it could not be postponed and they had to proceed even though my wife was still in the hospital in Tennessee.

At just four days old, Reed had his first open heart surgery at CHOP and did very well throughout that process. It was very difficult to see our child hooked up to all of the machines, being on a breathing tube, being heavily medicated, and an incision down his chest where the surgeon had to cut to perform the surgery. Talking about an emotional roller coaster! Ultimately Reed recovered very well and was released back to Knoxville, Tennessee to the children’s hospital where he stayed three weeks. We finally came home with Reed one month after he was born.

Over the next several months Reed has grown, gained weight, developed a personality, and kept us up all night because he will not sleep! During a checkup with our pediatric cardiologist in April, it was discovered the Reed had some scar tissue around his Aorta that would need to be immediately repaired. On a moments notice, we flew him back to Philadelphia to have an angioplasty to repair this unforeseen problem. Reed did well through that procedure and while he was at CHOP, the decision was made to have the second stage of open heart surgeries. Reed made it through that surgery fine and was discharged to come home within seven days.

So by six months old, our son has had two open heart surgeries and an angioplasty. It is difficult to see him go through these operations, but we know this is saving his life. To look at Reed, one would think that he is a healthy six-month old. Reed still has one more surgery planned in about a year and a half, but until then we are enjoying everyday with him. Nobody can imagine what it is like to see your child go through these battles unless you have been there yourself.

However, during this process we have seen the very best in people who have unselfishly done anything they could to help us through this time. Congenital Heart Defects range in variety and severity, but there is one common theme among survivors and their families and that is LOVE and DEDICATION. We have developed such an appreciation and respect for all of the medical personnel and hospital staff that have been with us throughout this journey.

We specifically would like to thank Dr. Thomas Spray (Surgeon), Dr. Yvonne Bremer (Cardiologist), and Dr. Abby and Greg Blackmon (Pediatrician’s) for everything they have done to make this manageable, successful, and for saving the life of our son. We are very thankful that these physicians have dedicated their professional lives to the medical field in order to help save the lives of many children with heart defects that otherwise would be without hope.

Warmest Regards,

Andy and Leigh Ann Corbitt