The joy of cooking (and eating) after tracheomalacia

Charlotte was diagnosed with EA/TEF and tracheomalacia as a baby

For most little kids, a trip to the supermarket is an annoying chore, made tolerable only by the opportunity to request sugary snacks as a reward. But when Charlotte McQueen accompanies her mother, Erin, to the store, it’s a journey marked by imagination and delight. “Mom, can we get that?” she asks, pointing to a can of pureed pumpkin. “Oh, and we’ll need marshmallows and we can make chocolate frosting. It will be a great cake!”

At nearly 5 years old, Charlotte is an avid baker — a talent she picked up not at culinary school, but at the Yawkey Family Inn. There, a volunteer taught her and other chronically ill kids how to bake while they waited to undergo treatment at Boston Children’s Hospital. Today, it’s not only impressive that she can bake a cake, but also that she can eat it. For the first several years of her life, Charlotte couldn’t eat by mouth. In fact, she couldn’t even breathe on her own.

A scary turn of events

“We wanted a home birth,” remembers Erin. “It went smoothly, but then things started going downhill fast.” Charlotte stopped breathing and had to be rushed to a hospital near their home in Las Vegas, Nevada. Once there, she continued to have episodes of apnea and was transported to another local hospital for care.

When a clinician there tried to insert a nasogastric (NG) tube, which typically runs through the nose and down the throat into the stomach, Erin and her husband, Mike, knew the problem was even greater than they had realized. “They told us that they couldn’t fully insert the tube,” says Erin. “She needed surgery immediately.”

Physicians explained that Charlotte had esophageal atresia with tracheoesophageal fistula (EA/TEF). In this condition, the esophagus (the tube that carries food from the mouth to the stomach) doesn’t develop properly. Instead of connecting to her stomach, the esophagus connected to her windpipe, so that liquid from the stomach and lower esophagus were aspirated into her lungs.

Tracheomalacia made it hard for Charlotte to eat and breathe on her own.

‘She died in his arms’

Charlotte’s doctors in Las Vegas did as much as they could. But it was hardly the infancy that her parents had hoped for. “We had suddenly gone from the magical experience of a home birth to not being able hold our baby daughter for three weeks and being told she’s got a serious condition,” says Erin. “It was really, really rough.”

Despite the initial surgery, Charlotte’s airway kept collapsing, a sign of severe tracheomalacia. In this condition, the cartilage in the trachea (windpipe) doesn’t develop properly and causes the airway to narrow during exhalation. As a result, it may feel hard for children to breathe and eat, and they can acquire frequent airway infections, such as bronchitis or pneumonia, because they can’t cough or otherwise clear their lungs.

Surgeons inserted a tracheostomy tube to help her breathe, as well as a gastrostomy (G-tube), which supplied nutrition directly to her stomach. But Charlotte wasn’t getting better. At 8 months, Mike was home alone with her when she went into respiratory distress again. “She died in his arms and he had to manually resuscitate her,” says Erin. “When I got home, we realized that we couldn’t keep living like this.”

Finding help

The family decided to relocate to Texas so Charlotte could receive better specialty care. At first, things seemed to be going as well as expected. But another surgery didn’t help, either. When she was about a year and a half old, she caught a serious “superbug” infection that further complicated things. “We finally said, ‘This just isn’t good enough,’” says Erin.

Turning to a parents’ Facebook group, she learned about the Esophageal and Airway Treatment Center at Boston Children’s Hospital. “I picked up the phone and called,” Erin recalls. “I spoke with Dori Gallagher, the nurse coordinator there. I told her, ‘We need someone to help us.’”

In Boston, the family found that help. “Dori, Dr. Michael Manfredi and Dr. Russell Jennings are amazing,” says Erin. “They didn’t treat Charlotte like she was a problem or a disease. They treated her like a human being and made her feel special. They spoke directly to her, not around her.”

Charlotte with her mom and two little brothers

‘Nothing short of a miracle’

After a careful evaluation, the team determined that Charlotte’s esophagus had a “shelf” where food was getting stuck. Using a small endoscopic knife, Dr. Manfredi removed the tissue — and the results were stunning. “When Charlotte first ate by mouth after the procedure, she said, ‘Mommy, it’s like a slide going into my tummy,’” laughs Erin. “It was incredible to watch her finally enjoy eating.”

A subsequent procedure called a posterior tracheopexy helped support Charlotte’s trachea against her spine. “We always wanted her to be able to eat and breathe on her own, but we didn’t think it was possible,” says Erin. “But when we left Boston, she was doing both. It’s nothing short of a miracle.”

Hope for a healthy life

These days, Charlotte isn’t just surviving — she’s thriving. A big fan of the playground, she also loves dancing in ballet class and has a loft goal: When asked what she wants to be when she grows up, she answers, “A baker. And a doctor!”

“She’s doing beyond what we imagined was possible,” says Erin. “Our hope is that every child could have what Charlotte had at Boston Children’s — the hope that they can have a happy, healthy life.”

Learn about the Esophageal and Airway Treatment Center.