Hidden to the eye, but not the heart by Kylie Malin
28.05.2008
This week is Heart Children Awareness Week and the Stratford Press spoke to a local family with three heart children about their journey. Heart conditions are often referred to as the ‘hidden disability’ because outward symptoms are minimal. This does not mean that the conditions are any less serious. The Press encourages the public to give generously to the 2008 appeal. Street collectors will be out this Friday, May 30.
ON APRIL 24, 2003, Cheryl and Chris Craig welcomed their twin sons, Michael and Cameron into the world at the National Women’s Hospital, Auckland.
For the Craig’s, this was the start of a journey, both boys were born with congenital heart defects, Cameron’s were critical.
Cameron was born with a condition called hypoplastic left heart syndrome, where the left side of the heart, including the aortic valve, left ventricle and mitral valve are underdeveloped.
Michael was born with mild pulmonary stenosis.
At only four-days-old, Cameron underwent what was to be the first of three major surgeries - an aortic valvotomy.
Unfortunately, the surgery was unsuccessful and Cameron had to undergo a second surgery. Three days later he went into complete heart failure.
Because he was so little and his heart had been under so much pressure, Cameron did not recover well from the surgery and he was placed on the highest form of life support available, ECMO.
It wasn’t until May 13, while Cameron was still connected to tubes, wires and breathing apparatus, that Cheryl and Chris got to hold their son for the second time since his birth.
Almost two weeks later, Cheryl and Chris were able to hold the twins together for the first time, but they were not out of the woods yet.
They gave Cameron a 60 percent chance of survival when he was born. Other factors, like that he was a twin, because he was premature and the degree of his heart condition, lowered the percentage even more. It was a scary time we were often told he might not even make it through by the doctors and specialists, but Cameron is a fighter, said Cheryl.
On June 13, 2003, when Cameron and Michael were nearly seven weeks old, the Craig family finally came home to Taranaki. They spent two weeks at Base Hospital ‘learning the ropes’ before returning home to Chris’ parents Pukengahu farm.
The Craig’s settled into home with both boys getting stronger each day, and tried to lead as normal life as possible.
When Cameron was three-months-old, he gave his parents another fright and again went into heart failure. Luckily, it was found that he was just ready for the next stage of surgeries. This went well and the family were home within two weeks.
There were a few more hiccups along the way with Cameron’s health, but it was not until 2006 that he needed his next major surgery - a Fontan.
In April, just before the twins turned three, the family made the trip to Auckland with the latest addition to the family, Abbie, who had been born in March, also with a mild heart condition, mild aortic stenosis.
Unfortunately, Cameron had a post-operative complication called Chylothorax, so we ended up being in Auckland for six weeks. It was devastating after he did so well during the surgery, but we just went with it. What could you do otherwise? said Cheryl.
The twins are now five-years-old and have just started school and the boisterous pair belie nothing of the struggles of their first few years.
Thankfully, Michael’s heart condition has corrected itself without the need for surgery or medication, and Abbie is being monitored and will be re-checked when she is three.
Cameron has to undergo weekly blood tests as he is on a blood thinner called Warfarin after his last surgery.
As most children who go through three-staged heart surgeries are, and despite the fact that he loves to run, he can get a bit breathless.
He will rest and off he goes again. He doesn’t like to miss out on anything, said Cheryl.
This year, the Craig’s were told he has a slight issue with Cameron’s heart skipping beats, meaning he cannot take certain medications. This is not affecting him, it is just something his parents have to be mindful of.
Because Cameron’s type of heart condition only began to be treated with surgeries in the 1990s in New Zealand, the future is uncertain.
We take things as they come, and hope in the future there will be some new medical discovery that will help Cameron reach adolescence and maybe adulthood, just like his brother, said Cheryl.
But for now, he just enjoys playing with his brother and sister, the only outward sign of his struggles are the scars on his chest.
Throughout the Craig families struggles, they have received support from Heart Children New Zealand through the local Taranaki Branch.
It was nice knowing and meeting other parents and families who had been through similar things, to draw on their experience and of course to see that kids do get through it and can do what other kids do, said Cheryl.
Heart Children Taranaki currently supports 53 families throughout the Taranaki region, with new families contacting or referred to the branch every month.
The children are aged from birth to 20-years-old. Most of the children have their congenital heart defects diagnosed antenatally, just after birth or following routine Plunket or doctor check-ups.
Some children have acquired heart defects from illnesses.
They have a family support worker, Irene Wells, who is the first point of contact for newly diagnosed families. She has a Heart Child of her own.
Her role is to support and direct families, both new families and our existing members, to ensure they get the information and support they need and of course help to make things a little less scary and help with the unknowns.
There are also a number of services available to families locally.
They provide travel packs with essentials and a few extras for the heart child and parent/caregivers, while in hospital or travelling to Starship or Waikato, library books for hire that are heart related and other relevant subjects and access to hireage and purchase of Medela breast pumps and accessories for their members.
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