Stories about: Our Patients’ Stories

Experience Journal: Self-cathing around friends and at school

self-cathing-experience-journalClean intermittent catheterization (CIC), sometimes called self-cathing, involves emptying the bladder using a thin tube called a catheter when children and adolescents are unable to empty their bladders completely on their own. Some of the reasons children and adolescents might need to self-catheterize are if they were born with abnormal anatomy, had an infection that affected their bladder function or suffered damage to the nerves connecting the bladder to the spinal cord and then to the brain.

The Boston Children’s Hospital Department of Urology and the Department of Psychiatry created the Self-Cathing Experience Journal. This journal includes stories from children, young adults and parents who represent the collective wisdom of families who have experience with self-cathing. Here are some of their stories, in their own words.

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Dedicated Dad partners with doc to save daughter’s sight

lazy eye amblyopiaFive years ago, Dan Lee had planned a big outing with his newly adopted daughter Manisha Sapkota, a 14-year-old from Nepal.

“I was excited to take her to see ‘Toy Story 3D’ — her first 3D movie,” recalls Dan. But Lee was puzzled by his daughter’s response when he asked her what she thought.

“It was OK,” Manisha told her dad.

A few months later, Manisha’s lukewarm response made more sense. During her first physical exam in the U.S. at the Boston Children’s Hospital Martha Eliot Health Center, the doctor suggested Manisha might have amblyopia, or “lazy eye,” in her left eye.

“She told us she couldn’t see anything when the other eye was covered. I thought she was playing. I was shocked,” says Dan.

Manisha was referred to Dr. Amy Moy, director of optometry at Martha Eliot.

“Usually, optometrists see children for their first visit at age 3 or 4, but that’s not the case in Nepal,” explains Moy.

As Dan thought about his new daughter’s medical history, the diagnosis started to make sense. Manisha had probably been born with a lazy left eye that was never diagnosed. Because she didn’t use the eye, her vision worsened. But for Manisha, seeing the world through one eye was normal.

Rigorous testing confirmed the diagnosis — Manisha had lazy eye. Her vision in the left eye was 20/200 — the cutoff for legal blindness.

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Young actor plays unexpected role


Before he was diagnosed with neuroblastoma in 2014 at the age of 11, Noah Smith was a veteran of the children’s theater stage. The suburban Boston boy had been cast in ensembles. He’d played Kurt Von Trapp in “The Sound of Music.”

Little did Noah know that he would soon star in a video designed to allay the fears of children facing radioactive medication delivered intravenously in a lead-lined room where they’d live, under restrictions, for a week. After he received the medication, his parents would only be able to visit him one at a time, standing behind a lead shield and unable to touch him. Nurses would limit their time in his room, entering briefly to check vital signs. Parents and nurses alike would wear badges to monitor their exposure to the radioactive child in the bed.

Add to this the fact that most children who get the cancer that originates in nerve cells are under 5 and it’s easy to understand the anxiety these young patients and their families might feel anticipating MIBG (metaiodobenzylguanidine) therapy.

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The closest of calls: Infant’s DSM cured with life-saving brain procedure


Six-year-old Madelyn knows why she has to see a special team of doctors twice a year: she had brain surgery as a baby. But she doesn’t yet understand the full weight of the story.

“She knows there was a problem with something in her brain, and she had to go to Boston for special care, where the doctors made it all better,” says her mother, Julie. “She knows the team still checks in on her to make sure she stays healthy.”

As she gets older, Madelyn will be able to comprehend more and more. Someday she’ll realize not only just how lucky she is to be alive, but the incredible ordeal her parents went through when she was just 5 months old.

A mysterious illness

It was Valentine’s Day, 2011. Six-month-old Madelyn was sick — VERY sick. Her worried parents, Julie and Matt, took her to her pediatrician, who thought she was suffering a virus because she did not have a fever.

Madelyn in the hospital with dural sinus malformation
Madelyn in the hospital with DSM

“We took her home, but this virus wasn’t going away,” says Julie. “Eventually it got so bad we had to take her to the Southcoast Hospital emergency room (ER). She wouldn’t stop vomiting and couldn’t keep anything down, not even medicine.”

In the ER, Madelyn was so limp “she felt like a rag doll in my arms,” Julie says. That tipped off the doctor on call, Dr. Sara McSweeney-Ryan, to order an MRI.

“Dr. McSweeney-Ryan is the first doctor I credit with saving Madelyn’s life,” says Julie.

On MRI, it was clear that there was a problem in Madelyn’s brain, and her life was in danger. McSweeney-Ryan knew exactly where Madelyn needed to be.

“We thought, it’s already 1 a.m., maybe we can stay the night,” says Julie. “But they ordered an ambulance to take us to Boston as quickly as possible. There was no time to lose.”

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