Thursday, June 10, 2010

Child with Health Condition Changes Life's Perspective

By Laura Pearson

During a routine ultrasound during my 25th week of pregnancy, my obstetrician was concerned when he was able to detect only my heartbeat. Another ultrasound showed my son’s heart was beating only 48 beats per minute. The average heart rate of an unborn baby is between 120 and 160 bpm. Immediately, I was sent to Shands Hospital at the University of Florida in Gainesville, Florida, where I saw an obstetrician who specializes in high-risk pregnancies.

Doctors determined I had Sjogren’s Syndrome, an autoimmune disease similar to lupus, and my unborn son, Cody, had complete heart block. After that, I received weekly shots of the steroid, betamethasone, to mature his lungs for an early delivery. Eight weeks before my due date, Cody developed congestive heart failure and I had an emergency Caesarean section at Shands.

Cody’s been a fighter from the start and only had to stay in the hospital for 16 days. We were sent home with instructions about how to watch for signs of congestive heart failure. That occurred within his first year and he had a pacemaker implanted when he was 10 months old. Cody is 15 now and has had four pacemakers. He is doing great. Now that he’s 15, he’s anxious to start driving. Although he’s not allowed to play major contact sports, he has played Little League baseball, soccer, and basketball. He loves video games and hanging out with friends.

In the beginning, I asked “why” almost every day. Eventually, I answered that question with “So I can help others so they don’t feel as alone as I have.” Guilt played a nasty trick on me that first year. After I kicked it to the curb, I set boundaries for both of us.

First, Cody would grow up believing he was no different from any other child. That may sound easy, but in reality, it’s extremely hard. They want you to feel sorry for them and it’s so easy to do so when you look at that angelic face and think how unfair life is.

So, to make it work, however, you have to resist the urge. Cuddle them for the regular scrapes, boo-boos and disappointments, but stiffen your spine when they put a hand over their heart and say things like, “My pacemaker hurts.”

No, don’t ignore your child when this happens (far from it). But instead of freaking out or melting into a pool of fear, respond to them the way “typical” moms do with children who complain about a stomach ache. After you’ve determined there’s no reason to call Lifeflight, then, if you feel like, you may go to your room and cry.

Having a child with a congenital heart condition has a way of changing your whole perspective on life. I wonder sometimes who I would be today if Cody had been born healthy. I’ll never know, but I do know that I’m a much stronger person of spirit, mind and body. It’s toughened me up, which is a good thing, and made me very aware of just how precious life is.


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