February 14th is Congenital Heart Defect Awareness Day in Shelburne

February 12, 2014 · 0 Comments

Melissa Kottelenberg is a mother with a message, “Life can change in a heart beat”. For this dedicated mother of five, the expression rings especially true as her fourth child, Tyson, now five years old was born with a Congenital Heart Defect (CHD).

In a valiant attempt to raise awareness to this silent threat to life, Kottelenberg also hopes to encourage government funding for research, make a simple test mandatory before a baby leaves the hospital, and vows to help any mother facing this journey.

“When Tyson was ten days old he was diagnosed with a CHD and at that point, getting that news was mentally like hitting a brick wall, so impossible to focus,” Kottelenberg commented, “There’s so much to think about. At 13 days old Tyson had his first surgery at sick kids. When he was 5 months old, he had his second surgery and his third surgery occurred just after he turned two.”

Typically, during pregnancy ultrasounds can reveal CHD but often this defect gets missed. Most parents know that all babies are tested for many things before they leave the hospital but the simple test for CHD in which all hospitals are equipped to offer, never gets done. Astounding to think many babies go home with heart defects only to realize days later when symptoms become apparent that something is definitely wrong.

According to the US Nation Heart and Lung Institute symptoms include Cyanosis, (a bluish tint to the skin, lips and fingernails), rapid breathing, fatigue, tiredness, difficulty waking, and poor blood circulation, all very frightening indications to witness in a newborn.

Kottelenberg’s resolute devotion to raising awareness has resulted in Shelburne’s Mayor Ed Crewson declaring February 14th as Congenital Heart Defect Awareness Day in Shelburne. Taking advantage of Valentine’s Day, giving it new, deeper meaning, Kottelenberg, her family and supporters will wear red that day, paying tribute to young Tyson’s triumphant journey thus far.

“Mayor Crewson has been nothing but generous and supportive. If I can help even one other mom on this difficult journey, it will mean so much. If we can get CHD Awareness Day done nationally, we may get more funding into research, more babies can be tested and that would allow parents to be prepared for what is to come. In our case, God planned, he knew what was best for us,” Kottelenberg explained.

According to the Children’s Heart Foundation, over 1000,000 babies worldwide are born with CHD. Every year 100,000 will die before their first birthday and thousands more will die before they reach adulthood. Kottelenberg mentions 1 in 100 babies will be born with this defect in Canada. Cardiologists don’t know the cause of this defect and cannot determine if environmental considerations or genetics are to blame. The fact of the matter is more can be done and that is what Kottelenberg is fighting for.

“A simple ultrasound can be done to make sure the heart has all four chambers,” reflected Kottelenburg, “We’d like all babies to be tested before they leave the hospital. It doesn’t seem like too much to ask.”

Tyson Kottelenberg is definitely a miracle by all standards and CDH does not define him. A bright young boy and like his older siblings, Tyson attends school, lives life to the fullest and although young, realises he is special as regular trips to Sick Kids Hospital has become Tyson’s “normal”.

“We are so grateful to Sick Kids, Ronald McDonald House, we just feel so blessed,” Kottelenberg explained referring to herself as a ‘Heart Mom’.

Armed with a special message, Heart Mom Kottelenberg has this to say, “Being a ‘Heart Family’ means rejoicing over all the little milestones that maybe we’d otherwise take for granted and thanking God every day for his grace, and mercy, and acknowledging that it’s all because of Him that we have the blessed opportunity to know and love: a living, breathing miracle.”

For more information visit Tyson’s Blog at tysonmatthewkottelenberg@blogspot.com

By Alex Sher