PORTLAND — Missing half of her heart and fighting pneumonia and leukemia, 3-year-old Aubrey Coburn wheeled her IV pole around Maine Medical Center while yelling at nurses Sunday.
“She’s a tough cookie,” mother Tracy Aube Coburn of Greene said from the Ronald McDonald House, where she is staying while feisty Aubrey mends.
Leukemia is the latest challenge for Aubrey, one her doctor deemed being struck twice by lightning with two very rare childhood conditions.
Aube Coburn said she found out when she was 21 weeks pregnant with her second child there was “a defect of some kind.”
She said she spent the rest of her pregnancy closely monitored and, by the time Aubrey was born, “it was worse than they thought.” The diagnosis was Hypoplastic Left Heart Syndrome, a congenital defect in which the left side of the heart is severely underdeveloped.
According to Boston Children’s Hospital, untreated survival for babies born with HLHS rarely exceeds one week. At only three days old, Aubrey underwent her first of three heart surgeries at Maine Medical Center.
The first surgery, called the Norwood procedure, connects the right ventricle to the aorta, directing blood flow to the body through branches of the aorta.
Aubrey went back into surgery at four months to have a Glenn shunt, a direct connection between the superior vena cava and the pulmonary artery. This diverts half of the deoxygenated blood to the lungs without help of the ventricle.
Aubrey’s third surgery, the Fontan procedure, was performed in May 2013. The operation allowed all the deoxygenated blood to flow to the lungs and the single left ventricle to pump all the red blood to the body.
“They had to replumb the heart so that it can work and supply blood to the body,” Aube Coburn said.
Due to Aubrey’s HLHS diagnosis, the Make a Wish Foundation granted her wish to be a princess and gave her a trip to Disney World in early March.
Aube Coburn said Aubrey recovered really well from her surgeries, enjoying playtimes and the outdoors. By any measure, she’s acting like a normal child of her age, if not more of a spitfire than some, according to Aube Coburn.
That was until Aubrey started getting numerous viruses and ear infections. Her general health began to fade and she didn’t want to play. Aube Coburn described her skin color as becoming gray.
Fearing Aubrey was anemic, Coburn took her to the doctor. Aube Coburn said that when they did a finger-stick test, a hemoglobin value of 10 would have been low. Aubrey scored a 4.
Things moved quickly from there.
More blood tests were ordered at 2 p.m. and by 7 p.m. Aubrey was immediately admitted to the Barbara Bush Children’s Hospital because of a low white blood cell count. By 9 p.m., suspicions pointed to leukemia.
The diagnosis was Acute Lymphoblastic Leukemia, a cancer of the blood and bone marrow that progresses quickly if not treated. ALL is the most common cancer among children and, according to Aube Coburn, has a 90 to 95 percent cure rate “which is way better than it was for her heart.”
That was on April 8 when Aubrey began her first treatments, spending the next two weeks in Maine Medical Center. She was home for barely two days when she returned Thursday with pneumonia in one lung. Aube Coburn said she will be there for at least another week.
Currently, Aubrey is receiving chemotherapy every four days and steroid treatments twice a day. “This has been going on 16 days,” Aube Coburn said.
Do to the “replumbing” of Aubrey’s heart, treatments have been challenging. “Her entire anatomy on the inside is different,” Aube Coburn said. Conventional medicine does not work where blood flow has been reversed, making needle placement critical.
Holding down the homefront is husband Chris Coburn, who is unable to take time off from work, taking older daughter Jada, 9, to school and to visit her sister in the hospital.
“Jada is a pretty amazing little girl,” Aube Coburn said, “Jada and Aubrey are very close and they miss each other.”
Aube Coburn said, “It’s really hard on everybody but we’re hanging in there — luckily we have a lot of support.”
“You can’t eat, you can’t sleep,” she said, “no one wants to see their kid get sick like this.”
Aube Coburn sees Aubrey’s spirit as a great asset, “Nurses love hearing her yell at everybody from her room,” she laughed.
The Coburns have set up a page at www.gofundme.com/89i9ok to help keep up with mounting medical bills.
dmcintire@sunjournal.com
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- Tracy Aube Coburn stands next to her husband, Chris Coburn, and a photo of their three year-old daughter, Aubrey, who is battling leukemia at Maine Medical Center in Portland. Aubrey was born with a heart defect that necessitated three open-heart surgeries and many other procedures in her young life. Just as they thought she was getting better, the cancer diagnosis came. “She has actually kicked me out of the room right now,” Aube Coburn said. “She’s really, really grumpy right now for a couple of reasons. First, she doesn’t feel good, and secondly, she’s three. Lastly, she’s on steroids for her treatment.” “She’s got a lot of fire,” Chris Coburn said.
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- Aubrey Coburn
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