Seamus at Halloween :
Hypo Plastic Left Heart Syndrome. What's That???

Tim and I have always dreamed of having a large family. We both knew what we were looking for when we were dating. Tim lived in a house he bought with the signing bonus from his all too short NFL career and I was happily teaching in a Catholic school when we met. We became friends and soon fell in love between New Years Eve Parties and church events. Six months after we were married, we were overjoyed to find out we were pregnant with our first child. This started our pattern of having a child every other year. In 2001, when we were pregnant with our fifth child, we were ready to welcome another new little life to our family.

I remember being very busy with the other children and offering this child to God very early. We had two boys and two girls but my husband really wanted another boy to give a special name that he had been saving. I had a routine ultra sound and all seemed to be going just perfect. At the end of spring, my parents came to take care of the other children and I had an uneventful labor and delivery. We had a beautiful baby boy who received a very special Irish name, Seamus.

Seamus was the same weight as his brothers and sisters and seemed fine. It was Saturday morning and I was ready to be discharged from the hospital and Seamus was having his final physical. I was waiting for Seamus to return but only heard the carts full of other babies passing my room. I began to worry and called the nurse to ask where my Seamus was. Finally, I was informed that he was breathing very fast so they put him in an incubator to get more oxygen to his system. They said there was some fluid on his lungs and they wanted to do an echocardiogram (take a picture of his heart) to see what was going wrong.

We were ushered into the Neonatology Unit to see our son hooked up to oxygen in a glass box. I can't tell you the emotions that we went through. We wanted to believe that he had a mild infection from gestational diabetes that could be treated with a simple medication. Once the Dr. read the echocardiogram the diagnosis was given. Our dear little leprechaun's left chamber of his heart was too small. It is called Hypo Plastic Left Heart Syndrome. This is a very severe heart defect that makes it impossible for the left chamber to pump enough blood to the whole body.

If Seamus didn't have surgery, he would certainly die. However, there was a doctor in the area that had great success with a series of operations that could save Seamus. We were quickly taken by ambulance to Milwaukee Children's Hospital knowing that our son would soon have open-heart surgery. Our initial responses swung like a pendulum between fight and flight. I would wake Tim up at night and tell him over and over that I couldn't believe this was happening. Other times, I would gather all my courage and shout out that we were going to make it through this and we did.

If you saw 3-year-old Seamus today you would never know that he has had four open-heart surgeries. He is active, smart and so friendly that he loves to show off his scar and tell you all about his heart. I have other children to compare him to and he talked in sentences before any of the others and at two could hit a plastic baseball with a bat straight at dad hard enough to hurt. He takes medicine two times a day and has a blood test done every other month or so. These things are just a part of who he is and he does them without complaint. He is truly a joy.

I think one of the scariest times for us was just after Seamus was diagnosed. My husband looked Hypo Plastic Left Heart Syndrome up on the internet. The first article that he read suggested therapeutic abortion or letting the baby die after birth because this heart defect is so severe. Looking back now, I am glad we never even gave that a thought. The medical community is making such huge advances in this area that much of what is found is outdated misinformation.

If I could, I would give back Seamus' heart for a new one with a larger chamber, but I would never give back what our family has learned during this time and how happy we are that we have this happy little Leprechaun in our life. We are also happy that Seamus and his brothers and sisters now have a new little sister to love.

Back to Congenital Heart Defects Stories

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.