Feb. 7-14 proclaimed as CHD Awareness Week in Orangeville

February 11, 2015   ·   0 Comments

Orangeville Mayor Jeremy Williams has proclaimed this week  as Congenital Heart Defects Awareness Week in the town, while in Shelburne Saturday will be CHD Awareness Day. Congenital Heart Defect (CHD) is a defect in the structure or the heart and surrounding great vessels that is present at birth.

“Congenital heart defects (CHD) is the most common type of major birth defect, affecting one in every 100 Canadian newborns,” said Mayor Williams in issuing the proclamation last Thursday. “Sixty years ago, less than 20 percent of infants born with complex heart defects would reach adulthood. Today, with the medical advances in Canada and around the world, more than 90 percent, including those with complex congenital heart defects, reach adulthood.”

Many of the defects do not require treatment, however some of the more complex congenital heart defects require medication or surgery, and sometimes both. The effects of CHD can include shortness of breath, cyanosis, fainting, heart murmurs, the under-development of limbs and muscles, poor feeding or growth and respiratory infections.

“This growing population of young adults [who survive] requires a better quality of adult care to help them avoid or manage complications and live life to its fullest,” said Mayor Williams.

Mayor Williams was joined for the presentation by two youth in the community who live with CHDs.

Branden Heighington, who has been part of the proclamations since they began five years ago, is now 16 years old, and lives with a CHD called Bicuspid Aortic Valve Stenosis. Aortic valve stenosis is caused by the leaflets, which make up the aortic, valve getting stuck and being unable to separate, causing a blockage that makes the pumping work more difficult. There are also a number of other issues that can occur through this.

Reid Arbeau, who is four years old, was also present for the proclamation. Reid has what is called the Transposition of Great Arteries (TGA), which is a condition where the two main arteries going out of the heart, which are the pulmonary artery and the aorta, are transposed, meaning their positions are switched.

“Congenital Heart Defects Awareness Week provides an opportunity for families whose lives have been affected to celebrate life and to remember loved ones lost, to honour dedicated health professionals, and to meet others and know they are not alone,” explained Mayor Williams.

The Mayor urged residents to become more aware and educated about CHDs, and educate themselves on the issues surrounding it.

“The establishment of Congenital Heart Defects Awareness Week also provides the opportunity to share experiences and information with the public and the media, in order to raise public awareness about CHD,” he said.

The mothers of two other children with CHD, Melissa Kottelenberg of Amaranth and Amanda Carter of Shelburne, were present at Shelburne Council’s meeting Monday night when Mayor Ken Bennington proclaimed this Saturday, February 14, the town’s CHD Awareness Day in support of their efforts to bring attention to the cause.

Melissa and Amanda found each other, not through mutual mom-friends or an idealist play group, but in tough circumstances – on the fourth floor of the cardiac ward of Sick Kid’s Hospital with their seriously ill children. Melissa and Brian Kottelenberg’s six-year-old son Tyson, one of five siblings, has hypoplastic right ventricle and tricuspid atresia as well as lung issues; essentially, Tyson has half a heart with only the left pumping chamber.

Amanda Carter and Matt Clarkson’s 10-month-old daughter Penny, sister to three-year-old River, has dextrocardia, a condition where her heart is centre right, rather than on the left side, of her chest. Both children have a variety of other serious complications.

Both mothers say they knew soon after birth that something was not right with their baby, but they did not know what.

Melissa said that in the first few days she saw that Tyson was not thriving; they took their tiny son to Headwaters Health Care Centre for help and it would be a month before they would return him home from Sick Kids in Toronto. At just 13 days old, Tyson underwent open heart surgery. He would endure three surgeries in the first two years of his life. At six years old, their smiling little boy is in Grade 1 full time, but low oxygen levels leave him very vulnerable to illnesses such as pneumonia. More surgeries lie in his future.

Amanda had a feeling from day one that her beautiful baby girl Penny was not breathing or feeding well, but it took some time before she was diagnosed with heart problems and sent to Sick Kids hospital. She has undergone two open heart surgeries, one at just three months old. The second surgery has produced great improvements. Amanda says that right now Penny is learning to eat orally again after being on a nasal gastro tube for 10 months. Like Tyson, Penny has many challenges ahead.

The mothers have united in the cause to raise awareness about congenital heart defects, because “there are no cures for CHD,” said Melissa, “only temporary fixes.”

One in 100 kids in Canada and one in 70 in Ontario are born with CHD; 4,000 children die of CHD before their first birthday in Canada every year – more than all childhood cancers put together.” Amanda and Melissa feel that if more parents knew about the signs and symptoms there would be fewer tragedies.

“I was just a mom who had no idea what was wrong with my baby,” Melissa said. “Parents need to know the right questions to ask when the baby is still in vitro so they can be prepared – some babies can even be helped at that stage.” They want every baby born to have an oxygen saturation test before leaving the hospital to make sure their hearts are functioning at an optimal level.

By having communities proclaim CHD Awareness Day they hope they can raise understanding in the Dufferin area, and continue that consciousness provincially and nationally.

The mothers said there are only four surgeons in all of Canada who currently know how to treat Tyson and Penny when they grow up. This is “pretty scary,” they say, in that the surgeons were not required in the past because the children did not survive. “The advancements are a blessing,” the mothers said, holding their children close, “but where do we go from here?”

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