Aubrey's Story 

Many children suffer from asthma and have to find that perfect balance to control it.  But for newborn Aubrey, there was no controlling the breathing problems she experienced.  By the time she was 8 months old, her trouble breathing had only intensified.

“Nothing helped her,” remembers her mother, Amber.  “It just kept getting worse.”

When the problem seemed to grow beyond control, Amber and her husband, Mark, took the young girl to their local hospital’s emergency room, where the news was less than encouraging.  Aubrey was in respiratory failure.  Life Flight® was called to take her to Geisinger’s Janet Weis Children’s Hospital immediately for specialized care.

“She was critically ill,” says Janet Weis Children’s Hospital intensivist Dr. Frank Maffei.  “She was likely near-death had she not been brought here so quickly.”

Doctors knew that this was more than an asthma attack – but the exact cause of Aubrey’s problems was difficult to pinpoint.  She was put on a ventilator in the pediatric intensive care unit (PICU) while tests were performed.

“The hardest part is not knowing,” says Amber.  “It took a day or two until they could tell us what was wrong with her.  It seemed like an eternity.”

A bronchoscopy – an exam that allowed for the visual examination of the lungs and air passages – showed that there was an abnormality, and an MRI helped determine what the abnormality was.

“The MRI clearly showed a bronchogenic cyst – an abnormal outpouching of part of the respiratory tree,” Dr. Maffei says.  “It’s a fairly unusual type of anomaly that can have life-threatening consequences if left untreated.”

Already critically ill with her normal airways compressed by the cyst, emergency surgery was necessary.  It was a difficult surgery – a complex procedure on a young girl who already was very sick – and while it went well, Aubrey was not doing as well afterward as doctors had hoped.  The surgery had alleviated the compression from the cyst, but it couldn’t cure an underlying infection.

She developed acute respiratory distress syndrome.  Both her lungs now were affected, and the outlook was looking less and less positive. Her lungs were so badly damaged that she required ongoing mechanical ventilation and placement of numerous chest tubes.

“I definitely thought, ‘why her?  What did she ever do?’” Amber says.

All means of mechanical ventilation now were exhausted.  It seemed likely that the only possibility remaining was life-support through Extra Corporeal Membrane Oxygenation (ECMO) – a lung-bypass process that involves withdrawing blood from the body, adding oxygen to it and returning it to the body. 

“That was really scary because we knew it was a last resort,” Amber remembers.

Doctors also knew that this was a last resort and decided to try a cutting-edge treatment before the ECMO machine.

“We decided to try a therapy that typically is done with neonatal patients and small premature babies – surfactant.  A specific formulation of surfactant had just recently been studied in older pediatric patients,” Dr. Maffei says.

The surfactant provided Aubrey a much needed improvement in lung function. Although she was able to be kept off ECMO, she still faced a slow, arduous recovery.

“Within about two to three weeks, I think we started to appreciate that this youngster was going to – number one – survive, but also survive with very few residual problems,” Dr. Maffei remembers.

“The world had been lifted off our shoulders,” Mark says.  “We had weeks of bad news, then one day, it just turned around.”

Aubrey continued to improve and developed more and more energy.  Now 3 years old, she is a happy toddler who loves to play with her siblings, Caleb and Madalyn.  She is followed by Janet Weis Children’s Hospital pediatric pulmonologists, who – along with all her other caregivers – are pleased with how far she has come.

“It definitely was a team approach to taking care of Aubrey – and that includes the parents,” Dr. Maffei says.  “Aubrey’s parents were unbelievable.  They’re intelligent, thoughtful folks who were there with her at every moment, and they continued to nurture her.”

Amber and Mark have similar praise for the Janet Weis Children’s Hospital caregivers.  “We had nurses who would work extra shifts, stay late, come in on their days off to take care of her,” Amber says.  “They truly get involved.  The doctors spend nights there with her at her bedside – even our surgeon had spent his nights there with her.”

Seeing Aubrey today, full of life, it sometimes can be difficult to imagine she went through such a battle – but she certainly emerged victorious.

“Now, when you see Aubrey, the memory of that sick child is erased – and you see this beautiful little girl who is thriving and enjoying life with her wonderful family,” Dr. Maffei says.

Aubrey was featured during the 2008 Celebration broadcast May 31 and June 1 on WYOU.