Archive for the ‘CHD’ Category

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In October of this year, my youngest son will be going on the trip of a lifetime. He and eleven other lucky kids from across New Zealand have been chosen to go to Disneyland.

Two weeks ago, we received an invitation to apply for a place on the coveted annual trip with Koru Care New Zealand, through our association with Heart Kids NZ. Yesterday, we got the happy news he had been accepted, and we’ll happily do our bit to help raise money for the trip, as this is such a great opportunity.

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Koru Care New Zealand is a charitable trust established in 1983. It’s run by volunteers ‘making dreams come true for seriously ill and disabled children.’ Heart Kids NZ is another charitable trust. It’s committed to providing lifelong support to those born with congenital heart defects and heart disease.

The youngest of my three boys was born in 2005, with complex congenital heart disorder (or CHD), although we did not know that at the time.

The first clue came when he started coughing at three weeks old, though he had no other symptoms of ill health.

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The cough would come and go from then on, however when he did contract the flu, then his health would plummet fast and the cough would become life threatening and continuous. It took me five years to get a diagnosis, as we went down the road of misdiagnoses and educated guesses and countless trial treatments.

Finally, after trying everything, I went back to our doctor with the whole story. She listened carefully to his chest. Her discovery of a heart murmur led to the hospital tests, which finally confirmed the problem was a hole in his heart or Atrial Septal Defect.

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In 2010, he underwent double bypass open heart surgery. The operation was later added to the “unusual casebook.” The hole in his heart was ‘more than just a hole, there was only a rim between the upper chambers,’ the surgeon, Dr. Elizabeth Rumball, told us later. ‘And his heart had grown a single vein from the liver to the bottom of the heart,’ something she had never seen before. Dr. Rumball had to figure out how create an autologous pericardial patch to fix both issues.

After six hours of surgery, my five-year-old woke in Pediatric Intensive Care, with a gash down his chest, in a lot of pain. His recovery process began there. Only three days out from the surgery, he moved to the high dependency unit and was already taking his first steps. Three days later we were released to go home.

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We’ve come a long way since those days.

They say it takes paediatric heart patients a year to get their energy back and a decade for the body to recover to the pre-surgery state, however, he is in good health these days. The difference with heart kids is that they are a little “fragile,” they don’t have the same stamina as other kids. They are also susceptible to emotional, developmental and behavioural problems.

My son has thrived since the surgery. Gone are the days and nights of coughing. He has quality of life and the prospect of a healthy future ahead, thanks to the wonderful doctors and staff at Starship Children’s Hospital.

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While we were in hospital, we joined the amazing Heart Kids NZ foundation. We put his name down on the list of kids interested in going to “Heart Camp,” a weeklong retreat each summer. From the age of eight, he has gone to camp every year. He’s learned adventure skills like kayaking, abseiling and rock climbing. He’s sat around campfires, and gone swimming, ridden the flying foxes and water slides. He’s made friends and had important experiences of independence. Because he was well known at heart camp, his name came up when Koru Care said they had places for four Heart kids on the Disneyland adventure.

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My son was the right age and state of health to be eligible, so his name went forward with a lot of others. And we were lucky enough to get picked. He was excited when I told him the good news because he has never travelled anywhere or been to a theme park, and he’s always wanted to go. This sweet boy who has been through so many trials in his life, will get to go on the adventure of a lifetime, to Disneyland!

Thank you to Koru Care New Zealand and to Heart Kids NZ and to the medical staff along the way for making all of this possible and for making a boy’s dream come true.

Blessings come in many ways, even when they’re sometimes dressed as catastrophes.

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Talk to you later.

Keep on Creating!

Yvette K. Carol

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If you can dream it, you can do it. ~ Walt Disney

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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com

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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.

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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.

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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.

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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.

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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.

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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?

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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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Subscribe to my Newsletter by emailing me with “Newsletter Subscription” in the subject line to: yvettecarol@hotmail.com