Author: Kat J. McAlpine

Pulmonary vein stenosis: A clinical trial in Jack’s juice glass

Jack, who has pulmonary vein stenosis, is pictured sitting on the back deck at this family homeAt just 6 months old, Jack Marquis was suddenly given four weeks to live. After he was born with complex congenital heart defects, Jack’s doctors in California had performed two open-heart surgeries that they thought would save Jack’s life.

But just when they thought he was out of the woods, Jack’s condition suddenly began to deteriorate rapidly.

“On top of everything else, we learned he had a rare condition called pulmonary vein stenosis,” says Jack’s father, Andrew.

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Experiencing how spinal fusion treats scoliosis before surgery day

Scoliosis patients and families look on as a nurse presents inside a simulation hospital room
The Spinal Program at Boston Children’s Orthopedic Center has partnered with the Simulator Program to offer a unique simulation experience to patients who will undergo surgical treatment for scoliosis, a procedure called spinal fusion, this summer.

“In my experience, patients do better when they are well prepared for surgery,” says Dr. Michael Glotzbecker, a pediatric spine specialist and surgeon at Boston Children’s Hospital, who performs dozens of spinal fusion surgeries each year to treat children with scoliosis.

That’s why Glotzbecker teamed up with Brianna O’Connell, a child life specialist and program lead of simulation programs for patients and caregivers at the Boston Children’s SIMPeds Simulator Program, to create an immersive day for patients and their families to experience spinal fusion well ahead of surgery day.

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Ask the expert: What is the best way to correct my child’s crossed eye?

Image of Dr. David Hunter, an expert at using Botox to correct crossed eyes
Dr. David Hunter is experienced in using traditional strabismus surgery and Botox injection to correct a child’s crossed eye.

If you see that your child’s eye has become crossed, or he or she complains of having double vision, you may be struggling to find clear answers about what caused this to happen and the best way to get your child’s eyes working together again.

When the sudden onset of an inward-turning crossed eye doesn’t respond to glasses and isn’t associated with other systemic or structural disease, it’s known as acute comitant esotropia. This condition is quite rare and usually requires prompt surgical intervention.

Strabismus: Misaligned eye(s)
Esotropia: Inward-turning (“crossed”) eye(s)
Comitant: Eye misalignment stays the same throughout full range of gaze

Until recently, the only treatment for acute comitant esotropia has been traditional strabismus (misaligned eye) surgery.

But more recently, injection of medical-grade botulinum toxin (Botox) has been used to correct esotropia.

So, how do you know if Botox injection is appropriate for correcting your child’s esotropia? Dr. David Hunter, Ophthalmologist-in-Chief at Boston Children’s Hospital, answers questions about the differences between strabismus surgery and Botox injection.

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A father’s hope for his son’s life

Juan and Fredy pictured in 2017, nearly one year after Fredy's tumor was removed.
Juan and Fredy in 2017.

Juan was looking forward to having his son, Fredy, 14, finally come home to live with him. The teenager had been living under the care of his grandmother since he was a toddler.

But on that long-awaited homecoming day, Juan was quickly jarred from feeling great joy to grave concern.

“When I saw his face, one side looked very different from the other and his lip was swollen,” says Juan. “He admitted right away that his face had been hurting.”

Juan remembered that the last time he’d seen his son — more than one year ago — Fredy’s face had looked slightly different then too. But whatever was happening, the situation had clearly become much worse since then. Something was undeniably very, very wrong.

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