Kingman newborn struggles against rare birth condition
Aurelia Grant born with centerline deformity
12/2/2012 6:01:00 AM
By Erin Taylor
A stack of hospital and doctor bills sits neatly organized next to a dried out flower arrangement with a "Welcome Baby" balloon still defiantly floating above. A banner containing the well wishes of high school students are grouped with other cards of support lined in a row. Organizing paperwork and clearing household clutter is about the only control Ben Grant feels like he has left.
Kingman residents Ben and his wife, Elizabeth, have yet to hold their four-week old daughter, Aurelia. She was born Oct. 30 with a condition so rare, fewer than 50 babies have been diagnosed with it in the last 100 years.
It's called a centerline deformity, and it could be the result of a hereditary condition. It's also possible that the cells from which Aurelia grew tried to split in the early stages of development into a twin. The end result has left her dependent on machines for her survival and devastated her parents, who were expecting to bring home a healthy baby.
"We didn't know anything was wrong until she was born," Ben said.
Unlike the piercing cries normally associated with a baby who has just been born, Aurelia let out only a few gasps for air after being delivered. The doctor let Ben cut the cord, and then Aurelia was immediately passed to a nurse. A tissue mass in her mouth and throat was obstructing her airway and the newborn was struggling to breathe. Doctors tried multiple times to intubate her with a breathing tube, but even after they got past the blockage, they weren't hitting her lungs. Doctors resorted to CPR to keep blood and oxygen moving while they struggled with the tube.
"My wife was being stitched up on one side of me and I look over and see them doing little chest compressions," Ben said.
After the breathing tube was finally in, Aurelia was rushed off for a chest x-ray, which showed that she had a diaphragmatic hernia. A tear in the diaphragm had allowed her intestines to move up, squishing her heart and lungs out of the way. That's why doctors couldn't get the tube in. Aurelia's lungs weren't where they were supposed to be.
As Elizabeth told friends in an online post, "She has 10 little fingers and 10 little toes and ears which are perfectly round and all the right parts, just kinda in the wrong places at the moment."
Aurelia was rushed by air from Valley View Medical Center in Bullhead City to Sunrise Medical Center in Las Vegas. Elizabeth was still physically recovering from the birth, leaving Ben to make the drive alone. Only problem was, Ben's truck had died on the way to the hospital shortly before his wife went into labor. He had just enough time to stop at a mechanic, who was able to get the truck up and running but wasn't able to actually fix the broken clutch because the part wasn't available.
With his wife still at Valley View and his daughter in critical condition, Ben was praying the clutch would hold out until he reached Las Vegas.
He cried most of the way. More than once he was so overwhelmed he had to pull to the side of the road.
Ben and Elizabeth met while they studied at Indiana University. They married in 2006 and two years later had a son, Alex.
The family moved to Kingman for Ben's job. He currently teaches math at River Valley High School in Bullhead City. Elizabeth is the director of Little Eagle Preschool in Kingman.
Little Eagle has a small staff and does not offer medical insurance to its employees. Ben's work does, but at $700 to $900 a month, the premium for adding his wife and son would have eaten the majority of each paycheck.
So the family relied on places like FastTrax Urgent Care for health care and paid cash or used credit cards for major medical expenses. That's how they paid for Alex's birth and how they intended to pay for Aurelia's.
Ben has a friend whose daughter had to be flown from Kingman to Phoenix for medical treatment. The friend's bill was $20,000. As he drove to Sunrise Medical Center hours after his daughter's birth, the stress of her condition was compounded by the medical bills mathematician Ben was already calculating.
"I had a lot on my mind," he said.
Ben was met in Las Vegas by his mother, Kathy, who had intended to fly in from Indiana anyway to help with the newborn. She went with her son to the hospital to see her only granddaughter.
"I'm a nurse. I see a lot of people in critical condition and hooked to machines," Kathy said, before pausing. "But this was my grandbaby and it was totally different."
Aurelia spent three days at Sunrise before being transferred to Primary Children's Hospital in Salt Lake City. Doctors' first concern for Aurelia was to get her pulmonary tension under control. At two weeks old, she had surgery to move her bowels and stomach back to where they should be. The suture stayed open for two weeks to reduce pressure in the 7-pound, 15-ounce baby's body.
Doctors also elected to put Aurelia on an ECMO Machine, which stands for extracorporeal membrane oxygenation. It's essentially a heart and lung bypass machine. It's not without risks, one of them being that the artery it uses to enter the body has to be closed off when the patient is removed from the machine. That meant that Aurelia's brain would receive less oxygen off the machine than someone who never had the procedure. The body could compensate for the loss over time, but the artery could never been used again.
Ben was without his wife when he agreed to the ECMO Machine, along with all the other last-minute decisions that had to be made when complications arose.
"I've signed so many consent forms, my hand hurts," he said.
Doctors still need to wean Aurelia from the machines supporting her heart and lungs. The mass in her mouth can't be removed without an MRI to see how it is attached and that can't be done with those machines in the room.
Aurelia's left lung is doing the work of two since the right one is undeveloped. If her lungs improve they can take her off the ventilator.
If not, they'll give her a tracheotomy, which could mean she'll remain in the hospital for the next six months to a year.
Ben said the family is already in financial limbo. He doesn't know how they'll finance all the treatments while balancing regular expenses.
"We make too much for help but not enough to buy what we need," he said.
Ben is currently back in Kingman taking care of his son while Elizabeth is in Salt Lake City where she's staying at the Ronald McDonald House. Both of their employers have been understanding, he said. Fellow River Valley teachers have donated their extra vacation time to him, but he's still grading tests and managing his classes. He knows he'll have to return soon to continue earning the paycheck his family needs more than ever.
He said that if there's any good to come out his daughter's situation, it's that the family has learned they have more friends than they realized.
"It's not until something like this happens you realize who your friends are," he said.
Ben's students donated $2,100 in proceeds from a school play, wrestling match and rummage sale to Aurelia's medical costs. Little Eagle gave $700 from a car wash and rummage sale.
The Kingman Chili's Restaurant also agreed to donate 10 percent of all sales from 11 a.m. to 10 p.m. Dec. 11 to the family. (A flyer, available at Little Eagle, must be presented to the server).
Donations are also being accepted at Compass Bank under account 7650 in Aurelia's name, along with an account at Fundrazr.com for those with Paypal accounts.
There's also a Facebook page under her name for those wanting to follow her progress.
The support has been overwhelming for Aurelia's father, who said he's been amazed by how much has been done for his little girl in the last four weeks.
"I mean, she's got a Facebook page, her own bank account, she's been in a plane," he said.
His mom has remained in Kingman to help her oldest son and support the household. Last Sunday, Kathy went to Manzanita Baptist Church looking for some spiritual comfort. The pastor compared having the smallest kernel of faith to a tiny mustard seed from which a giant plant can bloom.
After the services, she was given a single mustard seed. She rolled it between her fingers while she spoke about her granddaughter. Ben keeps the seed on his nightstand as a reminder of his mom's advice
"Something so tiny, that's all it really takes," Kathy said.
She went on to talk about eagles raising their young and how the mother will destroy the nest only when she knows they're strong enough to fly.
"This is just God messing our nest," she said. "He knows we can handle it."