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, MRIs, X-Rays,
echocardiograms, transplants, physical therapy, and more IVs 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" -- three 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 circulating 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 Kansas
City, while I stayed behind to recover. Two days later I arrived in Kansas City
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 percent success rate.
When he was 12 days old, we kissed our son goodbye and
watched as he was wheeled to the operating room. His surgery was supposed to
take 4-6 hours and we could do nothing but wait. After four hours, a nurse came
out to tell us that Kaden's heart condition was more complicated than they had
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.
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| Kaden recovers from the lifesaving surgery. Kaden means "fighter." |
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 two weeks later when we were able to take him
home.
Today, Kaden amazes us at how "normal" he is. He
still has pulmonary stenosis and an enlarged aortic root 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
United States. 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.
-Rachel
