Big challenge for such a little person

Pulmonary Valve Stenosis. A very scary sounding diagnosis. Any diagnosis that involves the heart can be scary to anyone who receives it, be they young or old. Imagine how much more frightening that diagnosis would be to the parents of a just days old baby girl. That is the diagnosis my wife and I were given concerning our daughter Hannah Grace just days after her August second birth.

Pulmonary Valve Stenosis is a congenital heart defect that according to doctors effects one out of every one hundred fifty children born in the US. Hannah spent the first 12 days of her life in two different hospitals while doctors were trying to determine the best course of action. Doctors say that PVS is not a hereditary condition, nor is it something that is caused by problems or improper care during pregnancy. It is some that just happens.

PVS occurs when the Pulmonary Valve does not function properly thus restricting blood from the heart to the lungs. In Hannah’s case it was the valve leaflets that were the problem. Think of the leaflets as resembling flower petals. They are supposed to paper thin and open and close freely to allow proper blood flow from the heart to the lungs. Hannah’s leaflets were too thick and partially fused together and thus did not open and close properly. These factors caused the right ventricle to pump harder trying to get the blood to flow past the bad valve. As a result of the strain of the extra pumping effort, excess muscle formed in the right ventricle below the valve, further hindering blood flow.

Pediatric Cardiologist Dr. Henry Kort of Medical City Children’s Hospital in Dallas performed a balloon procedure that seemed to help, for a very short time. After a series a weekly follow-up visits to Dr. Kort, he decided that the results of the balloon procedure were not lasting to his satisfaction and we needed to explore other options. Dr. Kort consulted Pediatric Cardiac Surgeon Dr. Eric Mendeloff and it was decided it was time to do open heart surgery. The thought of having someone operate on your one-month old, open-heart surgery no less, is a scary prospect. However, the wake-up call was delivered and it became a no-brainer when Dr. Mendeloff informed us that if we opted not to do the surgery, Hannah probably would not live past the age of five. So, after the consultation, Dr. Mendeloff performed open-heart surgery on our little fighter at one-month six days old.

Hannah is now just over 4 months-old and by all indications is now a normal, healthy, happy baby girl who is growing into quite a little princess. We are looking forward to our first Christmas with our little miracle. The doctors tell us there is no reason Hannah can’t be a normal child from this point forward. She should be able to play sports if she wishes, be a cheerleader, whatever. They say the worst thing we can do as parents is to treat her as “cardiac cripple”. We are doing our best to take their advice.

We are looking forward to watching out little miracle grow into the remarkable young lady we know she will one day be. We give God all the credit and the glory for her amazing recovery. She had people from coast to coast praying for her. It was quite moving to know so many people care. We are excited about what the future holds not only for Hannah but for our family as well. I will keep the blog updated with stories and pictures from time to time.

Jim Chitty

Writer/Columnist/Blogger/Proud Father