Congenital Heart Disease Awareness Week – Kaeden’s story

Congenital Heart Disease Awareness week runs from the 7-14 of February. The McKendry boys (l-r): Walker (5), Kaeden Blue (10 weeks) and Connor Mac pose for some Valentine’s pictures to commemorate it.
Left is Kaeden on December 1, 2020 – open heart surgery day. Right Kaeden, excatly nine weeks later. (Contributed photos)

MORRISBURG – On the surface, young Kaeden McKendry looks like any other 10 week old baby boy.

Happy and healthy, often with a big smile on his face, there’s little evidence of what this little ‘warrior’ has already gone through in the first weeks of his young life.

“It’s not something we can just pretend didn’t happen. He has the scar to prove and he will literally be followed the rest of his life to make sure his heart continues to function as it should,” said Kaeden’s mom who wants people to know and understand just how precious life is and about the amazing work that medical professionals are capable of.

February being heart month, and this week being Congenital Heart Disease Awareness week, Gina (Roberts) McKendry thought this was the perfect time to share her son’s story to help raise awareness.

Kaeden is the youngest of Gina and Brandon McKendry’s three sons. Gina was born and raised in Brinston and Brandon is from the Morrisburg area. The family of five now resides in Brinston.

“For us, we want everyone to be aware that congenital heart disease is an everyday occurrence,” said Gina in a recent interview with The Leader. “One in every 100 children will be born with some type of congenital heart defect and out of them, 25 per cent will need some form of open heart surgery in their first year of life, and a lot of these heart defects go undetected until it’s almost too late,” she said.

For her and her family, Gina says that while Kaeden’s early diagnosis was initially difficult to hear, they were thankful for it. Early diagnosis meant that they were able to have an appropriate treatment plan ready for Kaeden’s arrival.

In early summer 2020, during a regular 12 week prenatal screening, Gina was told that there was something ‘off’. A measurement at the back of the baby’s head was 1.5 mm larger than it should have been.

From that point on additional testing was done to properly diagnose the issue.

At 20 weeks during a fetal echocardiogram the baby’s heart rate was perfect.

“He had the hiccups. He was moving like a wild man, to me that meant he was healthy and this was all a misunderstanding,” recalled Gina. But, twenty minutes into the process, the tech spotted something and let her know that a cardiologist would be phoning shortly.

Knowing that something was wrong was already difficult, but Gina said that since this was all happening in the midst of the COVID-19 pandemic that meant she had to go to all her appointments and get all this information about her baby on her own. With her other two sons, dad Brandon was with her during every prenatal scan, which simply wasn’t allowed this time around.

“COVID made everything a hundred times harder. Basically, I did everything alone. The day we found out about Kaeden’s heart I was alone,” she said.

Because of all the restrictions, doctors from CHEO were unable to come to the hospital where she was having the testing to deliver the news in person.

After the test was over she was sent alone to a small room with not much in it but a water cooler to take the phone call from the cardiologist.

“I’ll never forget that phone call,” she said.

“I’m so sorry Mrs. McKendry, your baby has a serious congenital heart defect, and without treatment he won’t live,” Kaeden’s cardiologist Dr. Lougheed told Gina, delivering the news that Kaeden had Transposition of the Great Arteries which is a rare congenital heart defect.

The incidence of TGA is estimated at 1 in 3,500-5,000.

With this defect, the vessels that carry blood away from the heart are improperly positioned. In TGA, the two main arteries connected to the heart are switched, creating a situation in which the body never receives the oxygen it needs.

The good news for the McKendry family was that Kaeden was perfectly fine and developing safely in the womb because the fetal heart works differently than the heart after birth.

However, what it meant was that in order to receive the arterial switch procedure surgery he would need soon after being born, he would need to be born in Toronto at Mount Sinai in order to have the lifesaving surgery at Toronto’s Sick Kids Hospital.

The severity of Kaeden’s condition meant that a team of specialists needed to be ready and on standby so that Kaeden could be taken immediately via underground tunnel to Sick Kids as soon as he was born.

So, Gina had to relocate to Toronto by 36 weeks on her doctor’s advice.

“It was too dangerous for Kaeden to be born in Ottawa,” she said. “Although they could have handled the delivery, it’s the aftermath that would have been the problem.” Had he been born in Ottawa he would have needed to be flown to Sick Kids via helicopter thus delaying the life saving surgery he needed.

Luckily, a member of Gina’s strong family network, her Aunt Nan Thomson, lives in Scarborough and offered her a place to stay while awaiting baby Kaeden’s arrival.

Having endured enough of this process on her own, Gina’s grandmother Barbara Smail accompanied Gina to the city.

“It was extremely hard on me leaving my boys Walker (5) and Connor Mac (3),” said Gina. “I had never been away from them overnight. The longest I had ever been away was to work a few hours at the restaurant (McIntosh Inn).”

Gina and Brandon’s mothers were ready to take care of Walker and Connor at home as long as necessary.

“Our families rallied together, taking turns and doing an incredible job at keeping the boys’ lives as normal as possible,” said Gina.

Although Brandon had planned to join her in Toronto on November 29th for the birth, Baby Kaeden had other plans. Gina’s water broke days earlier than expected and Brandon had to make a mad drive in the middle of the night to the city. He made it to the hospital just in time for Kaeden’s birth on November 28th at 5:24 a.m.

Six pound, 10 ounce baby Kaeden spent three days in the cardiac critical care unit. At that point doctors decided that he was strong enough to undergo the open heart arterial switch surgery.

The heart of a newborn is about the size of a quarter and Kaeden’s surgery took 6.5 hours.

“It was the longest day of our lives,” said Gina, adding that everything went extremely well.

After a few minor post surgery issues were resolved and Brandon and Gina were taught how to take care of the operation scar, on December 7th at 2:30 p.m. the family was released from hospital.

“We’re still in shock at how quickly we were released,” said Gina. “We were told it would be three to four weeks in hospital if he was strong, or upwards of three months if he struggled. Kaeden was six days!”

“Getting to take him home so soon after the surgery just comes down to him being as strong as an ox. He literally is just an amazing little warrior. When I first started researching all of this everyone kept writing about heart ‘warriors’ and honestly there’s no better noun to describe them,” said Gina.

Kaeden David Blue McKendry is now 10 weeks old. He weighs 11 pounds, four ounces.

Gina explained the significance of her third son’s name – Kaeden is an Irish name meaning little fighter, David is after Brandon’s dad, and Blue is in homage to what he went through so he never forgets what struggles he faced in the beginning. (Babies who have TGA will often have a bluish hue at birth.)

Since being released he has had a condition called supraventricular tachycardia, that is being treated with medication for the next six to 12 months and he goes to CHEO every 3-4 weeks for follow up visits.

“He continues to thrive,” says Gina. “We’re just so lucky to have him here safe and healthy. It’s more than we ever could have asked for.”

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