Make A Child Smile

Ryan's Story
written by mom Tracey

Our second child Ryan was born on December 14th, 1991 and initially we were not aware that anything was wrong. His Apgar score at birth was 9 and he was a beautiful baby.

When we took him for his first check up with the pediatrician at 6 weeks of age the doctor detected a heart murmur. He suggested we make an appointment at Strong Memorial Hospital Pediatric Cardiology. We went there on a Friday thinking this was a waste of time. As we were in the room as they were doing the echocardiogram we noticed the doctors leave and call in other doctors to look at the screen. At this point we knew something was wrong. Little did we now how wrong it would be.

The doctor told us that it looked as if Ryan had 4 major heart defects and that we should bring him in to the hospital on Monday for a cardiac catheterization. The first time they tried to perform the cardiac catheterization to determine the extent of his heart defects his heart stopped. They were able to revive him but he was then placed in ICU for a few days.

When they attempted to do it again a few weeks later his heart fluttered again. So they were never able to get any complete diagnosis as to what was wrong with Ryan. But based on the echocardiogram they thought he only had a three-chambered heart and that there was not anything they could do and that we should just bring him home and provide him with comfort care. That was the most difficult day in our lives. But luckily our cardiologist wanted to try the catheterization one more time and this time they were ready to inject Ryan with medication as his heart started to flutter. The doctors were finally able to get an accurate picture of what was wrong with Ryan’s heart and they found that there was a fourth chamber – it was quite small but was big enough that it changed the whole scenario of what had to be done.

After further tests Ryan was diagnosed with complex congenital heart defects – he had Transposition of the Great Arteries, a hole in his heart, a leaky mitral valve and a Tricuspid valve leak. He had his first surgery at 8 weeks of age to put a band on his pulmonary artery.

When Ryan was two years old we traveled to the Cleveland Clinic to see a surgeon who had just moved here from Australia who specialized in the type of surgery Ryan needed. Ryan underwent a complex surgery called a Double Switch with a Senning Procedure where basically they rerouted his arteries so that his right ventricle now pumped to his lungs and his left ventricle pumps to his body, which is the opposite of what a normal heart does. He was in the hospital for 8 weeks and was extremely weak and unable to walk for 2 months afterwards.

We noticed after that surgery that his breathing seemed to be labored. After more tests, it was discovered that the leaky mitral valve that he had had worsened significantly as a result of the surgery. The doctor informed us at that time, that this leak developing so soon after the surgery that Ryan had, was very serious and that Ryan was probably not going to survive the next year. But he is quite a strong willed boy and has continued to defy the odds. The doctors increased his medication, which allowed him to do ok until he was 7 years old. At that time we returned to the Cleveland Clinic and a repair was done on his mitral valve. He bounced back fairly quickly after that surgery and was even able to play T-ball for a few summers.

However, in 2004, we noticed a decline in his stamina. He started Junior High school and was unable to carry the textbooks in the halls, ride the bus, or participate in gym class. For a boy his age who loves to watch sports, this was very difficult for him. He sat on the couch all day as the kids in the neighborhood played kickball and rode their bikes but he could not join them because he was just too tired all of the time.

He had a cardiac catheterization in October/04 and the doctors found that the leak in his tricuspid valve had worsened. The exercise stress test also showed that his heart exercise capacity had decreased by 70% over the past year. So, Ryan had another surgery in April 2005 to repair his tricuspid valve and put in a BiDirectional Glenn shunt and a pacemaker. He developed an infection and fluid issues following this surgery so he was in the hospital for 3 weeks followed by 6 weeks of IV antibiotics at home.

This surgery left Ryan with severe anxiety and depression issues. Unfortunately, the surgery does not seem to have helped too much with his stamina so it has been very difficult for Ryan to have gone through the surgery and all of the complications with no improvement in how he feels. The cardiologist told us that Ryan may do ok for several years or it is possible that his ventricular function will decline and at that time the only option for Ryan will be a heart transplant.

Ryan has also been suffering from multiple bone fractures over the years - most with minimal types of falls. The doctor finally ordered a bone density scan in November 2006 and found that Ryan has osteoporosis - which has probably been caused by the diuretic he has been taking as a baby which causes his body to urinate out the calcium from his body. Blood work showed that Ryan's vitamin D level was very low and his Parathyroid hormone was quite high, so the doctor now has him on Vitamin D and calcium supplements. Hopefully this will strengthen his bones and prevent future fractures. It may also help with his muscle strength but we will just have to wait and see.