Small but Mighty Warrior
Born with heart defects, Kylan Blake has conquered many medical complications to become the happy, healthy child he is today.
At her 20-week ultrasound, Raina Blake and her husband, Nick, were excited to learn their first child was a boy. Just one week later their elation quickly changed to worry, when they learned their unborn baby had four different types of congenital heart defects—and the only way he would survive would be to have a series of three open heart surgeries in his first two years of life.
Scared and yearning for information, Raina and Nick turned to the Internet hoping to learn more about their child’s condition, but all they found was a lot of negative data and misinformation. Thankfully they received the reassurance they needed from their pediatric cardiologist, who told them their baby could have a good quality of life. And they found the hope they needed from a pediatric heart surgeon at Advocate Children’s Hospital – Oak Lawn.
“Our meeting with Dr. Michel Ilbawi was the most incredible meeting I’ve ever had with any medical professional,” shares Raina. “He sat down in front of us, drew our son’s heart and explained exactly what needed to be done; it was amazing. Then when he was finished, he gave us a hug and told us everything would be all right.”
Welcome to the world
On May 18, 2009, Kylan Nicholas Blake was born at 38½ weeks gestation via emergency C-section, after his heart rate plummeted during labor. A team from the neonatal intensive care unit was standing by in the delivery room and immediately transported him to the unit to begin care. Kylan did well in his first few days, and at nine days old he was wheeled into the operating room for his first open heart surgery.
“We knew that he was in good hands with Dr. Ilbawi and his team—and we had to put our faith in the idea that their hands were going to heal him,” says Raina. “The surgery was performed without complications, and when we saw Kylan we saw a beautiful, healthy boy. We were so grateful, happy and excited… it was like we were seeing him for the first time.”
Two and a half weeks later—when Kylan was 27 days old—he was finally released to go home.
Adjusting to life
The first few months the family focused on adjusting to their new life. There were what-ifs and uncertainty, but then Kylan had his second surgery to re-route blood flow through his heart at four months old and did great. After that, Raina remembers their family life becoming very normal. They were cautious, but they didn’t want to keep Kylan in a bubble. He grew into a typical, active toddler.
Just after his second birthday, Kylan went in for his third—and hopefully last—open heart surgery, which was the final step to make the right side of his heart the main pumping chamber for the rest of his life. After watching their son struggle with low oxygen levels for the last year, Raina and Nick prayed this surgery would make Kylan healthy.
“When we were finally able to see our little warrior, he looked incredible,” says Raina. “His lips and nails—which had always been blue—were a beautiful, healthy pink for the first time in his life. We were so happy and relieved!”
After the last surgery, Kylan started preschool and his parents let him do everything typical of a little boy his age—running, climbing, jumping. When he started experiencing breathing issues last year, he had to undergo surgery to widen his narrowed aorta, and his parents say he has been a different kid ever since.
Happy and healthy
Today Kylan is a happy, healthy 6-year-old. Though he understands his restrictions and knows how to self-regulate, he doesn’t have a problem keeping up with his friends. He is active and adventurous, and loves karate, swimming and sledding. Kylan is also enjoying his new role of big brother to twin siblings born in February.
“I never thought I would see the day that life is so normal, and for that we are so grateful to Advocate Children’s Hospital and to all of the amazing doctors and nurses there,” says Raina. “We couldn’t be more blessed and thankful for where our journey has led us, and we can only hope this continues for a very long time.”