Stories about: Our Patients’ Stories

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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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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Taking my own advice: When the professional becomes a parent

Treatment of Robin sequence.

As a disability expert, my whole career has been spent giving parents advice. I’ve given advice on parenting, doctors, child development, school and resources to support them. I was confident working with families and helping them navigate the often crazy and overwhelming world of special needs. But when I was 34 weeks pregnant with my own child, I found myself on the other side of the situation.

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