When Keira Kelley started collapsing shortly after her first birthday, her parents were terrified. But what was almost as upsetting was the feeling that no one believed something was actually wrong with their daughter.
“The first time it happened, she tripped over a chair and was unconscious and grey,” says Kate, her mom. “My husband thought she was gone. He called 911, and when the EMTs arrived she started to come to. They thought maybe she had the wind knocked out of her.”
The Kelleys took her to urgent care near their home in Norwood, but she seemed okay, so they chalked it up to a one-time fluke.
Another episode, and then another
Ten days later, she collapsed again, during a visit to her pediatrician.
“Keira went grey and didn’t respond, but it was only for 5 or 10 seconds,” says Kate. “It was really scary, but a bunch of doctors and nurses rushed in to examine her. They told me she was okay, and she had probably just fainted.”
Kate tried to explain that the same thing had happened a few days before, and expressed her concern that it was more than a fainting spell, but her fears were dismissed.
Over the next 28 hours, Keira had three more of these episodes. Kate brought her to their local hospital, hoping for another answer.
“They told me she was breath-holding and that her brain would eventually tell her to breathe,” says Kate. “I kept repeating, ‘No, I know it’s something more than that.’ I felt like I was begging for someone to listen, but they insisted she was fine.”
Finally finding a friendly ear
Feeling desperate for answers, Kate called her pediatrician’s office again and one of the doctors suggested they bring Keira to the Neurology Clinic at Boston Children’s at Waltham. The neurologist said Keira’s brain function seemed fine, but thought her symptoms sounded more like a cardiac issue.
“They referred us to cardiology the very next morning,” says Kate. “And that was the first time I felt like someone was taking Keira’s condition seriously.”
The next day, Kate and Keira met with Dr. Kathy Jenkins at the Waltham campus. During her exam, she had another quick episode.
“I was getting ready to convince Dr. Jenkins something was wrong, like I had with the other doctors, but she just looked at me and said, ‘I get it. Keira’s not going home, you’re going to Boston right away, and we’re going to get to the bottom of this.’”
Kate was relieved her concerns were finally being addressed. “At the end of the day, parents know their child best, and that includes knowing when something isn’t right,” she says.
A diagnosis leads to a gift
Keira was immediately transported to the Boston campus, where she was seen by Dr. Doug Mah, director of the Pacemaker and ICD Program at Boston Children’s Heart Center. After running some tests, he explained that Keira had an uncommon variant of vasovagal syncope resulting in extensive sinus asystole. This means that she has fainting episodes during which her heart stops beating.
“Once we were under the wings of Boston Children’s, I immediately felt taken care of,” says Kate. “They didn’t dismiss me, and in less than 24 hours, Dr. Mah had diagnosed her condition. We’re just so grateful we got her there.”
Armed with a diagnosis, the next step was finding a treatment. After discovering that the medication normally used to treat the condition made Keira ill, Mah decided her best option would be a pacemaker.
“Keira’s pacemaker was implanted three days after Christmas, and it was the best present we received last year,” says Kate. “It was scary, but now I can’t imagine going back to life without it.”
Keira still has episodes of dizziness, but the pacemaker keeps her from completely losing consciousness and prevents her heart from stopping. It’s not clear yet if it’s a condition she will eventually outgrow, so at this point they just need to watch and wait.
In a positive place
In the meantime, Keira has returned to her role as energetic little sister — doing her best to keep up with her older siblings, Xavier and Lanie.
“She’s such a free spirit, a real spitfire,” says Kate. “She always wants to be running and climbing and jumping.”
Kate says the pacemaker has given their family a sense of security they didn’t have before.
“I’m so very grateful to Dr. Mah and the electophysiology team for the care they provided to Keira, and to Dr. Jenkins for believing me and ensuring Keira was accurately diagnosed and treated. Our family is so grateful to Boston Children’s for the support they have shown to our family throughout this ordeal. I fully believe my daughter is safe today because of the incredible care she received at Boston Children’s and we will be forever grateful.”
Learn more about Boston Children’s Electrophysiology Service.