As a parent, your children pass so many milestones which at the time seem incredible and wondrous: their first tooth, their first smile, first step, first day at school, first night away from home, passing the double digits, and so on. As a parent of a child with CHD, Congenital Heart Disorder, you have additional, special milestones. Surviving the surgery is the first one.
And it’s not a given. You come face to face with this brutal reality the first day you arrive in the Children’s Heart Ward for your child’s procedure. The specialists sit you down to explain the risks of open heart surgery. The real danger lies in what they call the “bypass.” The surgeons must stop the heart beating, and divert the blood, passing it through a machine while they work on the heart. This creates the threat of blood clotting. They tell you, your child may be permanently brain damaged or die. You have to sign a waiver at this point which basically says you agree to take these risks.
Next, the psychologist shows you a book of the photos of the surgery and graphic detail of the children’s chests afterwards. This is tough love; they say the preparation is necessary because otherwise, the shock for the parents is too great.
By this stage, you’re quaking in your boots, trying to look strong and brave for your child. You have to be the parent, even though you wish you could run home to your own.
Therefore, surviving the surgery is the first milestone.
My son was an unusual case, and patching the ASD (Atrial Septal defect) did not entirely fix the problem. When they took him off bypass the first time, and closed him, the surgeons saw the blood coming out was still blue instead of red. Something was still wrong. They had to open the heart again, stop the heart and put him on bypass for a second time.
They discovered an “anomalous” vein going down to the liver. This defect was “unique to him.” They replaced the patch so it covered the hole and the unusual vein. This time his blood ran red. My five year old had survived a double bypass.
He made it through that terrible first day in the Pediatric Intensive Care Unit. “OW! Mama it hurts!” were his first crying words. The second day, he said, “I need to get well!” He made it through the first few days in the High Dependency Unit, and taking his first painful steps walking in the ward. Surviving week one in recovery is the second milestone.
Then we went home and he managed the first six weeks at home when CHD children must not fall over or take a blow to the torso and getting comfortable enough to sleep every night is the tricky part. Third milestone, ticked!
It typically takes CHD children twelve months to regain normal energy levels. My son had only just started at school when he had to have his surgery. When he returned to school a month later, he could only do half days and I had to give him a piggyback home every day, because he was too tired to walk. A year later, he was at school doing full days and walking both ways. Fourth milestone!
In 2011, we returned to the Children’s Heart Clinic for a check up. Most patients get “discharged” at this point. 95% of cases survive into adulthood which is a good success rate. However my son had been added to the “unusual case book,” and as such, the surgeons asked us to return in five years, so they could check on him again.
This week, we went back for our second check-up. Returning to the ward brought all the memories back. We peeped in down the hallways. My son remembered that when I’d placed him on the metal bed in the operating theatre, he’d worried that the blanket wasn’t thick enough to keep him warm!
The nurse gave son a check up. We filled out a questionnaire. Yes, he still gets tight-chested sometimes when he runs, yes, he gets blue lips when he does a lot of exercise, and yet, that doesn’t stop him. He plays golf and soccer, he’s learning to play the drums, and he runs around as much as the other kids. He’s fit and healthy.
The nurse gave him an E.C.G. and then an ultra-sound. The heart surgeons conferred and finally announced he was officially “discharged.”
Son and I “high-fived” on the way to the car. Yes. He made the fifth milestone. “Onwards and upwards from here,” as my father would say.
What milestone has made your heart sing lately?
Talk to you later.
Keep on Creating!
Yvette K. Carol
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“It doesn’t hurt to be optimistic. You can always cry later.”
— Lucimar Santos de Lima
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Yvette Carol, Author 