February is American Heart Month and for most of us this brings to mind adults with cardiovascular disease, but there is another group that is often completely overlooked. They are the children whose lives have been shattered by congenital heart disease. They cannot run and play like other kids. Their parents live in constant fear of them having cardiac arrest, stroke or worse. They have experienced open heart surgeries, heart catheters, MRI’s, X-Rays, echocardiograms, transplants, physical therapy, and more IV’s and blood draws than they can count. They are children whose childhood has been stolen and have been made wise well beyond their years.
“Congenital Heart Defect”- 3 words that I had probably heard in passing but never paid much attention to until March 13, 2009. That morning I was headed to the hospital for a scheduled C-Section and everything went smoothly until my son was born. He immediately had problems breathing and was placed on oxygen and transferred to St. John’s in Joplin. I was able to briefly touch his hand before he left and then did not see him again for two days. My plans of snuggling and enjoying the first hours of my baby’s life flew out the window. Then we were told something that I can still hear as clearly as the day it was said: “We think there’s something wrong with his heart.” At St. John’s he was diagnosed with a Congenital Heart Defect called Transposition of the Great Arteries and he was transferred by jet to Children’s Mercy Hospital in Kansas City. We had chosen the name Kaden Shiloh for him, Kaden means “fighter” and Shiloh means “place of peace”. The names and their meanings became even more special to us when we realized what he was facing.
Transposition of the Great Arteries occurs during early pregnancy, around eight weeks, while the heart is forming. The aorta and pulmonary artery are switched. Instead of the blood circling and mixing like it is supposed to the blood coming from the body to the heart never receives oxygen and the oxygen rich blood coming from the lungs never goes out to the body. Kaden was very lucky in that he had an additional defect that created a hole between the chambers in his heart and allowed for some mixing of blood. When he was less than 24 hours old he had a balloon atrial septostomy which created a larger hole in his heart and allowed us some more time before he had to have surgery.
My husband Steve followed Kaden to Joplin and then to KC while I stayed behind to recover. Two days later I arrived in KC and was able to hold my baby for the first time. He looked so perfect. If it wasn’t for the wires and IV line, I wouldn’t have been able to tell there was anything wrong with him. We were able to spend the next week and half rocking and holding him as much as we wanted. We spent a lot of time talking to doctors and nurses and searching the internet for information. The surgery that Kaden needed was called an Arterial Switch and had a 96% success rate. When he was 12 days old we kissed our son goodbye and watched as he wheeled to the operating room. His surgery was supposed to take 4-6 hours and we could do nothing but wait. Four hours in a nurse came out to tell us that Kaden’s heart condition was more complicated than they realized and that the surgeon didn’t think he was going to be able to repair his heart. She told us that Kaden’s heart would not be able to sustain life. The next several hours were a blur while we waited for more news. Finally the nurse came back to tell us that the surgeon had been able to do “something” and she wasn’t even sure what it was, but that he thought he had been able to fix Kaden’s heart. After an 11 hour surgery Kaden’s heart was again beating on its own and he was taken to the Pediatric Intensive Care Unit. We later learned that Kaden’s surgeon Dr. James O’Brien, never once left the operating room during those 11 hours and we are so thankful that he wasn’t willing to give up on our son.
Later that night as we sat in Kaden’s room his heart stopped beating. The doctor rushed in and began performing CPR and a chaplain came to pray for Kaden. After several minutes Kaden’s heart was again beating on its own and we knew we had witnessed Kaden’s second miracle of the day. The next morning Kaden began improving and every day after that he was a little better until 2 weeks later when we were able to take him home.
Today Kaden amazes us at how “normal” he is. He still has pulmonary stenosis, narrowing of the pulmonary arteries, which his cardiologist continues to monitor. Otherwise he is a very healthy and happy little boy. He loves running and playing with balls and we hope that he will be able to play sports someday. He has a long white scar running down his chest and every time we see it we are reminded of what a miracle he is.
According to the CDC, Congenital Heart Defects are the most common types of birth defects affecting nearly 40,000 infants each year in the US. Some CHDs are preventable but most are not. Many of these children never get a chance to live a normal life, if they get to live at all. The biggest way we can help these children is by raising awareness so that additional funding can be obtained. New research needs to be done to find ways to help those affected by CHD’s and maybe someday even find a way to prevent them