Kyle’s Journey to the Heart: How a newborn with HLHS is inspiring a community
by Chase Collum
Mar 19, 2014 | 3474 views | 2 2 comments | 12 12 recommendations | email to a friend | print
From the moment a couple first realizes they will be bringing a child into the world together, everything changes. Expectations arise, and visions of sporting prowess, high intelligence and technical savvy abound.

With all that to focus on, no parent ever expects to hear the news that his or her unborn child is going to have a congenital heart defect.

For Maspeth natives Joe and Danielle Graham, it was no different. Nothing could prepare them for news that their soon-to-be-born son Kyle had a rare form of Hypoplastic Left-Heart Syndrome (HLHS).

“The first weekend, my husband and I were catatonic,” Danielle said. “We had had a miscarriage a year before.”

To make matters worse, the news of Kyle’s distress came mere days before Joe and Danielle’s August 24th wedding.

“We did a sonogram three days before the wedding and they said there was something wrong with his heart – they didn’t know what – and they would have to do some tests,” Danielle said.

Originally, Danielle and Joe were using Westchester Medical Center, but when testing showed Kyle had HLHS, Danielle said, the cardiologist hinted at the possibility that abortion might be the best option. Danielle told her abortion was “absolutely not an option.”

Even still, the prospect of a child with a congenital heart defect was daunting.

“We were told he would never be able to do sports and we would probably not be able to see him graduate from high school,” said Danielle. “It was a very grim prospect for us.”

Joe remembers telling Danielle, as they were leaving Westchester, “One thing’s for sure; we’re never going here again. And the second thing [I remember thinking] was, it’s our job to find this kid the best doctors we can.”

Danielle immediately took to online forums to find out as much as she could about HLHS and one of the first results to catch her eye was a link to a support group called Mended Hearts in Connecticut.

At around the same time, Joe and Danielle were considering their options for treatment and they were able to connect with Doctors Rakesh Sahni and Emil Bacha, the former of which is the chief of the Division of Cardiac, Thoracic and Vascular Surgery at New York-Presbyterian/Columbia University Medical Center, and director of Congenital and Pediatric Cardiac Surgery at Morgan Stanley Children's Hospital.

Shortly after their connection, Joe and Danielle attended Little Hearts’ annual fundraiser on Long Island.

“She had plans to introduce me to every parent of a child with hypoplastic, and every family there had used the same doctor that we were going to use,” Danielle said. “Watching their children run around and play you wouldn’t know unless you looked at their scars that there was anything wrong with them.”

It was there she realized they had the best doctor the New York area had to offer.

“He’s very humble, very reserved, but he’s a complete rock star,” she said. “I mentioned Dr. Bacha and all of the sudden there’s a circle of parents talking about how great he is.”

Through experiences like this, their confidence in Bacha’s abilities became stronger every day.

“When we went to visit the neonatal intensive care unit, Dr. Bacha showed us a few babies that had hypoplastic,” Danielle said. “As he was going through it he was explaining what Kyle’s special heart looks like,”

Bacha told the couple their son’s heart was unique even among infants born with HLHS because of a vein that ran alongside his heart acting as a decompression channel to take some of the strain of his feeble left heart area and his other organs including his lungs.

“They found that the decompression channel was much larger than they originally thought it was,” said Danielle. She remembered Bacha saying, “’I’ve been here 25 years and I have never seen anything like this before,’” Danielle said. “They actually started calling it a miracle vein.”

Joe explained that as a first-time father, he was crushed by the news of his son’s condition.

“You want this to be your proudest moment,” Joe said. “I really felt like I was going to have the boy in the plastic bubble. It scoops everything out of you.”

Despite his worries, however, he knew there was no time for self-pity.

“I knew I had to be strong for Danielle,” Joe said. “That’s when I realized this kid’s going to fight, and he’s going to have to survive three surgeries.”

Each surgery in the three-step process for treating HLHS, named after the physician who pioneered it, with the first called the Norwood surgery. The second is the Glenn surgery and third is called the Fontaine surgery.

“The next surgery will probably be around April or May depending on how things go,” Joe said. “It’s a little bit more of a complicated surgery, but being that he’s done so well after this first one, it’s a sign that he should do pretty well.”

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Nick D'Arienzo
March 21, 2014
Joe and Danielle are truly some kind of special inspiration. There seems to be no question that Kyle will grow up with this same kind of no-quit spirit within him. Love and prayers to you three, and by the way, very nice poignant story there, Chase Collum!
Deborah braga
March 21, 2014
I am so happy to read this about my little cousin I had everyone at churches praying for him and I would pray asking god to help the lil boy I believe is the power of prayer and faith on radio station I had them praying for Kyle . Thank you god for answering my prayers and everyone els prayers. And thank you to all the pastors that answered to my help for prayers . In Jesus name ... AMEN