‘That was the last place I would look at': NH mom, two daughters share rare medical condition
A New Hampshire mom suffered two strokes at a young age. After she got her heart checked, she decided to get her entire family checked.
What the team at Tufts detected was incredibly rare.
'I feel like the whole thing happened so that I could have them checked,' said Heather Strong of New Boston, New Hampshire.
She's feeling healthy and grateful now—-but that's how the New Hampshire mom felt even before she had her first stroke at 47 years old.
'My arm was just swinging in front of me and so when I grabbed it, it was all numb and I was like, you know, what's happening and as I was trying to compute what was happening, my right leg also gave out and so I just fell on the floor and just was there with my whole right side was just numb,' said Heather.
Luckily for Heather, after a few minutes she got the feeling back. A nurse herself, Heather knew something wasn't right, even though she lived a healthy lifestyle and was a former three sport athlete and avid hiker.
'I always you know really put my heart to the test for my whole life,' said Heather. 'So I didn't suspect anything with my heart. Like that was the last place I would look at.'
Despite not having any of the classic risk factors for a stroke, Dr. Carey Kimmelstiel at Tufts Medical Center found Heather had a couple of holes in her heart—a rare condition known as Atrial Septal Defect.
'One in every 2,000 live births, you know the majority of those will be picked up in childhood,' said Dr. Carey Kimmelstiel, with interventional cardiology at Tufts Medical Center in Boston. 'And one thing you can say for sure is that the earlier you close them, the better the patients do.'
Instead of open heart surgery--in 2016 the FDA approved an ASD closure device--to close the hole in a quick, outpatient procedure.
'And we were like the leading center in terms of enrolling those trials and implanting devices in a study that believe it or not went on for nine years and was ultimately shown to decrease the incidence of recurrent stroke,' Dr. Kimmelstiel.
Dr. Kimmelstiel implanted the tiny metal device to help close the holes in Heather's heart—-but little did he know—she wasn't the only Strong family member he'd have to treat.
Heather strong
'He was like you can have them checked,' said Heather. 'And I kind of took that as I'm getting them checked and you're doing it now.'
Out of Heather's three adult daughters the Tufts team learned two of them also had holes in their hearts. Both Emma and Molly also decided to get the same procedure as their mother.
'So we went on the same day and our procedure was back to back,' said Emma Strong. 'I went first and she was after. It was kind of fun. Yeah, like it was a little outing to Boston.'
And they also had Dr. Kimmelstiel overseeing it all.
'It was very quick, I didn't feel any pain,' said Molly Strong.
Just as rare as the condition, is the same doctor performing the procedure on three family members...
'I've been doing this a while, a long time, and it's you know, you can count on one hand,' said Dr. Kimmelstiel.
The Strong family is hoping their ASD devices will prevent any future strokes—and keep their hearts strong from here on out after learning a valuable lesson.
'I would just say it's better to know than to not know, like go get checked if anything you have concerns and figure it out, face it head on rather than be worried about what it could be,' said Emma.
ASD is twice as common in women as it is in men and there may be some genetic component to it, but Dr. Kimmelstiel says more studies need to be done. By filling holes in the heart, the device also prevents heart failure and pulmonary hypertension.
This is a developing story. Check back for updates as more information becomes available.
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