By Katherine Somerset
Clark was born at Huntsville Hospital on April 11, 2017. He was born full term but with a cleft palate and then within a few hours he had a hypoglycemic episode, his breathing became laboured and he was found to be very jaundiced.
He was transferred to SickKids to treat the jaundice, hyperinsulinemia and pulmonary hypertension which lasted seven weeks. He was then transferred to North Bay to work on feeding and to wean off the remaining medications. His parents, Amanda and Earl, were finally able to have their family together when Clark was sent home on his three-month birthday to join his brothers Ethan (15) and Oliver (3).
Clark was happy, playing and finally catching up on all of his milestones when, on Monday, November 6, he started showing signs of a cold with a running nose and occasional cough. Early Tuesday morning he got a fever and was taken to North Bay Hospital Emerge where he was seen and admitted right away for observations and assistance when needed. The next day Clark needed a little bit of oxygen support but was managing.
Early Thursday morning he was in need of full respiratory support and needed to be intubated and transferred to CHEO (Children’s Hospital of Eastern Ontario) in Ottawa. During the transfer Clark had cardiac failure but the amazing medics were able to get him back super fast. The CHEO team were ready and waiting for Clark and he was very quickly put on a heart and lung bypass machine. After three days his heart had greatly improved and his lungs had started to show improvement. He was diagnosed with Kabuki Syndrome which is a genetic disorder characterized by multiple abnormalities including distinctive facial features, growth delays, varying degrees of intellectual disability, skeletal abnormalities, and short stature. It is quite rare, affecting roughly one in 32,000 births and also is immunosuppressive which is what led to a cold causing such medical trauma.
Clark is still stable but his heart function has decreased and the doctors are having a hard time getting Clark’s lungs to clear.
Amanda remains off work from her job at The Burk’s Falls Medical Center to be by Clark’s side and Earl, who is a contractor and will soon be shut down for the season, remains at home to care for Oliver. Unfortunately, Clark’s first Christmas will be spent at CHEO fighting to get better.
Thank you for coming together as a community to support and help through these trying times.
A fundraising page has been created at youcaring.com for those who would like to support Clark’s family.
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