Close to their hearts – two mothers bring CHD awareness to Shelburne

February 11, 2015 · 0 Comments

Two Shelburne and area mothers have united to bring awareness to a cause very close to their hearts: CHD – Congenital Heart Defects. The families of Melissa Kottelenberg of Amaranth and Amanda Carter of Shelburne both have a young child with CHD. Mayor Ken Bennington made a proclamation on behalf of the Town of Shelburne, Monday night at the Town Hall, naming February 14th, 2015 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 idealic play group, but in tough circumstances – on the 4th floor of the cardiac ward of Sick Kid’s Hospital with their seriously ill children. Melissa and Brian Kottelenberg’s 6 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 big brother, 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 very 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 Hospital for help and it would be a month before they would return him home from Sick Kids Hospital 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-one 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 right or feeding well, but it took some time before she was properly 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 seen great improvements. Amanda says 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.” According to the mothers, “One in 100 kids in Canada and one in 70 in Ontario are born with CHD; four thousand 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 the Town of Shelburne 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 that currently know how to treat Tyson and Penny when they grow up, this is “pretty scary” – 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?”
For more information visit www.sickkids.ca

By Marni Walsh

Photo by Marni Walsh
Mayor Ken Bennington proclaimed February 14th, 2015 Congenital Heart Defect Awareness Day for the Town of Shelburne. Seen here with (left to right) Amanda Carter and her baby Penny Clarkson who has CHD; six year old Tyson Kottelenberg who also has CHD and his mother Melissa Kottelenberg. The two mothers and their families have united in the cause to bring awareness to CHD.