A father vividly recalls his reaction to what had just happened to his young son.
“How in the world did my 11-year-old just have a stroke?” he asked, incredulously.
Eleven-year-olds are not supposed to have strokes.
Tim had entered his son’s bedroom early the morning before to find him “in a bad place, physically.”
An ambulance rushed the child to a hospital nearest the family’s home, in Fort Myers. Within 24 hours, an MRI confirmed that Timmy had, indeed, suffered a stroke.
“There are parts I don’t remember, but I do remember not feeling great and being scared,” Timmy says.
On this day, Tim and his namesake, Timmy, are sharing their story together.
They are not new to doctors or hospitals. Timmy was born prematurely at 26½ weeks. Weighing just 2 pounds, 4 ounces, he fought valiantly to get stronger in his first days, weeks and months of life.
Before age 1, a ventriculoperitoneal (VP) shunt was placed to help drain excess cerebrospinal fluid from his brain.
Timmy began to fare better until around age 5, when his medical journey once again became more complicated. He struggled through a series of shunt-related emergencies and revisions and was in and out of the hospital — sometimes for weeks at a time.
In the spring of this year, just when Timmy was making strides and gaining a level of independence he had never had before — he would experience this devastating new setback.
Why did Timmy have a stroke?
After a full range of tests, an echocardiogram revealed a likely explanation.
Timmy was diagnosed with a patent foramen ovale (PFO). It’s an opening between the two upper chambers of the heart. Everyone is born with a PFO, but the flap closes after birth.
Unless it doesn’t.
An estimated 20 percent of the population has a PFO that doesn’t close and most never experience a problem — or even realize they have it.
But others aren’t so lucky. A PFO can increase the risk of stroke because small blood clots can slip through the right atrium to the left, allowing them to travel to the brain.
Now Timmy was at risk of having another stroke.
His doctor in Fort Myers referred Timmy’s case to James Thompson, M.D., a skilled pediatric interventional cardiologist at Johns Hopkins All Children’s Heart Institute — with an extensive background in PFO closures.
“If you can close the PFO,” Thompson says, “the data shows you decrease your risk of recurrent stroke by up to 97 percent.”
Tim liked those odds for his son.
During their appointment, Thompson took care to explain the commonly used method for closing a PFO. Using a catheter to access the heart, Thompson could place a small, metal umbrella-like device into Timmy’s heart to close the hole, reducing his risk of another stroke.
But there were some serious things to consider.
Far fewer PFO closure devices had been placed in children than in adults. Timmy would likely have the device in his heart for the length of his life. There was some risk of blood clots forming around the device.
Timmy’s dad also had concerns that having his son on blood thinners for a long time could put him at greater risk if he needed to have another surgical procedure related to his shunt.
Were there any other options?
The doctor wanted to think it through and promised to get back to him. But they both understood that time was of the essence. The sooner the PFO could be closed, the lower Timmy’s risk would be of another stroke.
Within a couple of weeks, Timmy’s dad received a phone call from Thompson.
There might be another option for Timmy, Thompson told him.
A newer technology allows for PFO closure with a simple stitch placed in the heart. The cardiologist would use a “transcatheter delivery system” to do the repair.
“You put one suture in the top wall and one suture through the bottom wall,” Thompson says. “You then put the knot on it and it cinches together, drawing the hole closed, like a purse string.”
The tiny polypropylene lock that keeps the sutures in place is a fraction of the size of the umbrella-like devices generally used to close PFOs.
Thompson is well-versed in the technique because he has performed several hundred of them on adults. He took an interest in the technology early on, and he was trained by the inventor of the device. He has published case studies on its use.
Thompson was the first physician in the United States to perform the procedure.
Timmy would be the youngest person ever to receive the procedure for PFO closure.
But the more Thompson examined the child’s case, the more he thought Timmy would benefit from this choice.
“With such a young patient, to say, ‘I’m going to put this metal device in your heart and you’re going to have it for the next 80 years — or ‘I’m going to put in this little stitch,’ it seemed like the better option.”
After thoroughly reviewing their choices with Thompson, Timmy’s parents decided to move forward with the procedure for their son.
Thompson and his team went the extra mile to secure access to the technology and to get all of the approvals — from the hospital, from the manufacturer and from the insurance company to make it possible.
“I guess I can’t say enough good things about Dr. Thompson,” Tim says. “It was a level of service we had never seen before.”
What does an 11-year-old remember about a heart procedure?
Timmy remembers the doctors and nurses taking extra time that morning to make him smile and put him at ease. They talked fishing and football.
Timmy’s dad ribbed Thompson about being a Packers fan. Tim pulls for the Bills.
“I don’t care who he roots for, as long as he’s good at what he does,” Timmy recalls saying.
The procedure went very smoothly.
Timmy’s dad and mom were greatly relieved to see Thompson come out into the waiting area with the news.
“From the time the stroke happened until that moment, you’re waiting for the possibility of another stroke,” Tim says. “To take that risk down so much is a tremendous weight lifted off.”
Life is slowly getting back to normal for Timmy. The stroke caused damage in an area of the brain that makes him more vulnerable to seizures, so his family monitors him closely for now.
But he’s able to do a little more each day, taking short walks and catching up on the fifth-grade schoolwork he has missed.
Meanwhile, he helps to keep his dad in a positive space.
A private person, Tim had been reluctant to share their story at first.
But when he mentioned it to his son, Timmy was thrilled.
“Dad, we have to tell our story!” he said.
“We may be able to help somebody else.”