By Alex Snyder, Defense Media Activity
Watching her swim across a chilly pool on a spring day, you’d never guess that Esther Liu is anything but healthy.
Precocious and petite, at eight years old Esther swims competitively, does karate, and can often be found running after her two brothers, Ezra and Ezekiel. But this wasn’t always the case.
“When Esther was born she was very small and wasn’t gaining weight,” explained Esther’s mother, Navy Cmdr. Michelle Liu, a physician at Fort Belvoir Community Hospital. “We assumed it was genetic.”
Unfortunately, it wasn’t.
While stationed in Naples, Italy, Michelle took Esther to an indoor trampoline park. Ten minutes into jumping, Esther collapsed.
“She had no pulse. She wasn’t breathing,” recalled Michelle. “I rushed over and began performing CPR. We were surrounded by people and I remember hearing a man say, ‘she’s breathing again,’ but as a doctor, I knew what she was really doing was what we refer to as agonal breaths – where all the air leaves the body. It means someone is dying.”
Esther was rushed to a nearby pediatric hospital, where she was stabilized, but not out of the woods. Later that night, she suffered a second episode of cardiac arrest and doctors performed CPR on her tiny body for more than forty minutes before she was revived.
“At that point, we started an intravenous medication used to increase blood flow to the lungs,” said Michelle. “There was short supply at the hospital and some of the medication intended for another patient was used urgently to save Esther’s life. It was devastating. I replayed my reactions over and over. I just kept praying that I had done enough.”
Within a few days, Esther was diagnosed with pulmonary hypertension and heart failure. She was transferred to a specialty care center in Holland, but the prognosis was poor and she was in a coma.
“We didn’t know if she had brain damage from before we got her to the hospital,” said Michelle. “But then one night, my husband was singing to her and she let him know she wanted a different song. It was a miracle … it was mercy.”
Despite the fact that she was now alert, Esther’s condition was still considered severe. She was given just one year to live.
“At that point, we started every therapy known to man,” recalled Michelle. “I just wasn’t ready to lose her yet.”
A short time later, the Navy moved Michelle and her family to Northern Virginia. Esther had been placed on the transplant list for a new set of lungs and it was a requirement that she be able to get from her home to the Children’s Hospital of Philadelphia (CHP) where the surgery would take place, within three hours.
It’s not uncommon for children on the transplant list to wait 18 months or more for their new lungs, explained Dr. Samuel Goldfarb, medical director of transplant at CHP.
Knowing she hadn’t been given that long, Michelle prayed for a miracle.
Child-aged organs harvested for donations are less common than their adult counterparts, and adult lungs are not eligible to be transplanted in underage patients under current standards.
“Esther was added to the transplant list in May of 2014,” said Michelle. “In July of that year, we got the call for her new lungs.”
Michelle was ecstatic for her little girl, but that didn’t mean it was an easy process.
Lung transplantation is an incredibly invasive surgery, said Goldfarb.
“Finding the lungs that are a match for each patient can be a long process, but it’s not the end,” he said. “After surgery, Esther underwent chemotherapy to ensure her new lungs wouldn’t be rejected and she was on steroids and other medications to reduce inflammation in her lungs.”
Esther’s recovery from the transplant was difficult, said Michelle.
“Esther actually had a third episode of cardiac arrest after the transplant, due to a mucus plug, and an adverse reaction to a transfusion she received,” she said. “With a transplant, you’re essentially trading one illness for another. A lung transplant doesn’t last forever. The longest living child I know of who received a lung transplant is 11 years out from transplant. This means that eventually we’ll have to decide to do this all over again.”
Unlike some other organs, transplanted lungs have a shelf life, and all will face rejection at some point, said Goldfarb, who said that fifty percent of patients who receive lungs are alive five years later.
At least two of the children who were transplanted the same year as Esther are already deceased.
“We do our best to try and maximize the organs to give our patients the longest and highest quality of life,” said Goldfarb.
Esther sees Goldfarb and his team every three months to monitor her progress. She’s nearly four years out from surgery and doing well.
“Our job is to worry so that the family doesn’t have to,” said Goldfarb. “We have a multidisciplinary team here that includes doctors, nurses, pharmacists, and other subspecialty providers. The ultimate goal is the best care for Esther. Our favorite thing as a team is when we can transition our patients to the adult center.”
Michelle and her husband Moses are devoted to the best care for Esther as well, and have partnered with her primary care physician at Fairfax Health Center in Virginia, as well as with Dr. Goldfarb’s team to ensure they do everything they can for their daughter.
Esther attends a small private school where she is exposed to less germs than she would be in a larger facility, since something as innocuous as a cold can be tragic to her health.
“I’ve read the literature, done all the research I can,” said Michelle. “She can’t cough on her own so she wears a vest that induces it. We control her acid reflux with medicine and diet, and keep her active – two things that most help her condition.”
Michelle also makes time to take care of other parents like herself. She runs a support group for other parents of children with pulmonary hypertension, and keeps in contact with the family whose family donated the organs that saved Esther’s life.
“Every day with her at this point is one more than I thought I’d get and I am so grateful,” said Michelle. “I just want to help others in this situation and pay forward the kindness we’ve been shown. I know the transplant family and I am so grateful they gave us this gift. Their child is living through Esther.”
To learn more about organ donation, please visit https://www.hrsa.gov/get-health-care/conditions/donation.html.
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