Stories about: Diseases & Conditions

Experience Journal: A bereaved mother’s lessons from the heart

Jessica with EthanJessica Lindberg’s son Ethan was a brave heart warrior whose journey at Boston Children’s Hospital began before he was even born. At 20 weeks, they learned he had aortic stenosis and evolving hypoplastic left heart syndrome (HLHS). At 22 weeks Ethan was the 30th baby to have an in-utero procedure to open his aortic valve and relieve pressure in the left side of his heart.

By the time Ethan was 2, he’d had four open-heart surgeries. He was also having feeding problems, developmental delays, and was struggling with executive functioning and spatial tasks. Like many other parents of children with congenital heart defects (CHD), Jessica wanted Ethan to thrive as well as survive — to make sure he had the skills to eat, walk, grow and socialize.

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Six tips for talking with your child about cleft lip or palate

back to school tips for cleft

Having a facial difference such as cleft lip or palate can be difficult for any child, but it’s especially challenging when they’re about to enter a new social situation like going to school. For some parents, this time is even more stressful than it is for children. In fact, many of the parents whom I meet in the Cleft and Craniofacial Center at Boston Children’s Hospital tell me that having discussions with their child about the cleft is the number-one concern. 

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Saving Vanessa, part 1: A mystery rash, a stroke and an epic rescue

DADA2-Vanessa

Vanessa’s rash first appeared on her arms and legs when she was 3 or 4 months old. It was red and bumpy and went away when she was sick with a virus, which happened often. Then it would come back. The dermatology team she saw at Boston Children’s Hospital was puzzled.

“I was expecting they were going to think it was nothing, but they took it very seriously,” says Katherine Bell, one of Vanessa’s mothers. “They took a biopsy and very quickly realized they had no idea what it was.”

Vanessa’s case was even featured at a regional dermatology conference where doctors take up mystery patients. “A hundred to 150 dermatologists looked at her,” says Katherine. But no one could pinpoint a diagnosis.

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Taking on the world: Lonnie Lu’s experience with laryngeal cleft

laryngeal cleft repair
Lonnie Lu and her mom at Boston Children’s Center for Airway Disorders.

Not every little girl gets a visit from a Disney princess on her birthday, but Lonnie Lu received just such a surprise when Princess Elena stopped by her party last month. Her admiration may go beyond a love of colorful dresses. Minus one evil sorceress and an enchanted kingdom, the character’s tale of strength and resilience might as well be Lonnie Lu’s story, too.

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