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Technology and bravery help a young girl get new lungs

Lizzy Highstreet, 11, is now recovering at home after receiving a lung transplant due to complications from cystic fibrosis.

Just a few months ago, 11-year-old Lizzy Highstreet was very ill. She was hospitalized at Lucile Packard Children's Hospital Stanford, awaiting a lung transplant after several months of struggling with worsening complications of cystic fibrosis.

To help Lizzy survive the wait, her physicians had placed her on extracorporeal membrane oxygenation, or ECMO, essentially the "lung" part of a heart-lung machine. Tubes carried Lizzy's blood from a cannula in her neck through a circuit outside her body to remove carbon dioxide and give her oxygen. ECMO helped support her for 37 days before her July 18 transplant, which is among the longest periods that a child in the United States has used the device as a bridge to lung transplant.

One reason this type of long-term ECMO use has been rare is that prolonged exposure to the plastic tubing in the machine traditionally increased patients' risk of blood clots. Another obstacle was that ECMO was typically used with sedation, causing patients to lose strength that they would need to recover from transplant surgery.

But technological advances and a big dose of personal determination changed the picture for Lizzy, a story I wrote for Packard Children's explains:

[I]n recent years, ECMO equipment has improved. The tubing circuits are smaller and coated in anticoagulant, reducing the risk of clotting. Critical-care specialists have also begun using ECMO without sedation ...

'As long as the patient is moving around, they can be a good candidate for lung transplant,' said cardiothoracic surgeon Katsuhide Maeda, MD, who performed Lizzy's transplant.

It wasn't easy: Moving Lizzy around with the neck cannula required 12 to 15 people.

'But Lizzy took it in good stride and worked with us to keep her muscles strong,' said critical care physician Bereketeab Haileselassie, MD. 'It was amazing how much she could do with a full ECMO circuit attached to her neck.'

Since October, Lizzy has been back home in Visalia, Calif., with her parents, her three siblings and her dog, Coco. She's cheering her brother and sisters at their volleyball and football games, riding her bike, and "running around the house with no more coughing attacks," Lizzy's mom, Tina, told me in a recent note. "And she got to ride in a new fire truck at a surprise welcome-home parade put on by her school."

Photo of Lizzy after transplant with several of her Packard Children's caregivers courtesy of the Highstreet family.

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