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our patients’ stories

Life with HLHS: Keeping up with Lucas

by Guest Blogger on July 22, 2014

Baird-boys-3By Rebekah McGowan

When we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.

“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”

And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.

Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year. Full story »

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Saving Grace

by Tripp Underwood on July 17, 2014

Grace 4It may seem like an insignificant thing, but a peanut butter cookie changed Grace Denney’s life forever. Just a small amount of peanut butter triggered an allergic reaction that left years of anxiety in its wake—and eventually lead Grace and her mother Richelle to Boston Children’s Hospital’s Food Allergy Program—which they credit with giving them their lives back.

A sudden onset

Growing up, Grace had always avoided peanuts. There was something about their smell that bothered the young girl so much that she went her first seven years without tasting a single nut or eating even a spoonful of peanut butter. But all that changed one day when she was at a baking event for a local youth ministry group.

Preparing goods for an upcoming bake sale, Grace was part of a team of girls making several types of treats, including a particularly delicious smelling batch of peanut butter and chocolate cookies. Thinking her tastes may have changed, Grace helped herself to one. Moments later her throat felt very dry and scratchy, making it difficult for her to breath, which scared both her and the adults supervising the event. When Richelle picked her daughter up that evening and heard what had happened, she suspected Grace might have had an allergic reaction and quickly made an appointment with an allergist. Full story »

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Life after cleft lip surgery: Finding Brooks’ smile

by Tripp Underwood on July 14, 2014

Brooks 4When Rick and Aimee Bellew learned that their second child Brooks would be born with a cleft lip and soft palate, they weren’t sure what to expect. So like most people looking for information, they took their questions to the Internet—which turned out to be a mistake.

“Just minutes into our first cleft lip search on Google and we were already devastated,” Aimee remembers. “The pictures staring back at us from the computer screen were so severe. We thought ‘there’s no way a child with a condition this serious looking can be otherwise healthy.’ It was very overwhelming.”

In the coming weeks, they met with doctors and specialists for further testing, and everything indicated that—aside from Brooks’s cleft—he was developing like any other healthy baby. And while the Bellews’ local care team gave them good news, they didn’t have the information on cleft lip repair that the family was looking for. Full story »

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SOG_2071_14-2Boston Mayor Marty Walsh recently gave the keynote address at Dana-Farber’s Living Proof: Celebrating Survivorship event. He shared his experience as a child being treated for Burkitt’s lymphoma at Dana-Farber and Boston Children’s Hospital.

Boston Children’s Hospital is proud to have been involved in the Mayor’s treatment all those years ago. Stories like his, and all of our patients, inspire the team at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center to provide the most advanced care and develop innovative treatments so the children they treat today can go on to do great things tomorrow.

The following excerpts from his speech, originally appeared on Insight, Dana-Farber’s blog :

I was diagnosed with cancer at age 7. I went through treatment for almost four years.

At 7-years old, I didn’t really know what was going on and how serious it was – and it was pretty serious. For many years I missed a lot of school. I missed most of my second and third grades. Full story »

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Determined to overcome HLHS

by Tripp Underwood on June 30, 2014

Peter-Dunn-3 Kerri Dunn can always tell when her son Peter is determined to do something because when he gets deeply focused his face scrunches up and he squints one eye tightly shut, which his mother says makes him look like a cute, 2-year-old version of Popeye.

It’s a face Kerri sees a lot, because Peter is a very determined little boy. The youngest of six children, Peter is always trying to keep up with his older brothers and sisters—or “my kids” as he calls them. And, despite his smaller size, he still manages to do so—whether they’re walking, running or even climbing trees.

While his determination to keep pace with his older siblings may seem cute on the surface, it’s actually an incredible testament to Peter’s strong will. Not only is he managing to follow in their much larger footsteps, he’s doing so with only fifty percent of a working heart beating inside his chest. Full story »

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When Priya Moorthy first learned she was pregnant, her plan was to defer medical school for a year, then finish her education when her baby had grown. But shortly after her daughter Vaidehi was born, Priya realized that caring for her would be a full-time responsibility. Even though she wouldn’t be returning to med school in the foreseeable future, raising Vaidehi would give Priya a unique medical education all its own.

A very special type of IBD

Vaidehi-bakesAt just three months old, Vaidehi was diagnosed with chronic granulomatous disease (CGD), a rare genetic immune deficiency that prevents her body from effectively protecting against certain bacteria and fungi. Because CGD is rare (it only effects around 1 out of every 250,000 people), there is a lot the medical community still needs to learn about the disease, especially when it presents with other gastrointestinal conditions Full story »

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This story originally appeared on Insight, Dana-Farber’s blog

Insights 1Jessica Tierney never thought she’d experience a harder moment than learning she had cancer at age 15 – until her 7-year-old daughter, Emma, was diagnosed with acute lymphocytic leukemia (ALL) last October.

Emma is undergoing treatment at Boston Children’s Hospital and Dana-Farber’s Jimmy Fund Clinic, just as Jessica did in 1991. “Emma already knew I had once been really sick, so I told her, ‘Look at me. I was treated a long time ago, and the medicine is even better now,” Jessica Tierney recalls of hearing her daughter’s diagnosis.

Jessica is a survivor of acute myeloid leukemia, or AML, a different leukemia than Emma has. Jessica was always told there was no danger of passing AML down to her two children, but there may be an ALL-AML link involved. Full story »

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Scoliosis surgery: from tears to smiles

by Lisa Fratt on June 11, 2014

Taychil4Fifteen-year-old Taylor Gomes approached her pre-operative appointment for scoliosis surgery as many teens might—in tears. “She came out of the appointment smiling. Not many people have that effect on Taylor,” says her mother Holly Gomes of Danvers, Mass.

Holly credits Taylor’s orthopedic surgeon Michael Glotzbecker, MD, of Boston Children’s Hospital’s Department of Orthopedic Surgery, with her daughter’s 180-degree shift in attitude.

A local pediatrician diagnosed Taylor with scoliosis when she was 8 years old, and measured her curve annually with back x-rays during her well-child appointments.

By the time Taylor turned 14, her curve had progressed, and her pediatrician knew it was time to refer to a specialist at Boston Children’s. Full story »

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