A North Texas baby has become a medical pioneer as possibly the youngest person in the United States to receive cochlear implants.
Maddox Burgess was born happy and healthy but with a small birthmark on his back.
It was a common infantile hemangioma, a vascular birthmark made up of blood vessels that form incorrectly and multiply more than they should.
While it's fairly common, a few weeks after his birth, the birthmark became infected.
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His mother, Jessica Evans, said she's not sure how it became infected but noticed it began to look more swollen and concerning. Within days, Burgess developed a high fever and Evans took him to the hospital where she learned the infection traveled to his brain.
Burgess spent weeks in the pediatric intensive care unit where he suffered seizures, high fevers and restless nights, eventually beating the infection that could have cost him his life.
However, meningitis had damaged his cochlea and robbed him of his natural ability to hear.
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"The ENT that was on call came and spoke with me and told me that if there was going to be any chance for my son to hear or speak, he would have to have surgery and have it fast," Evans said.
"I said OK, well, how fast is fast?' He said, 'By Thursday or Friday.' Then he said, 'And the FDA doesn't approve children under nine months of age for this surgery. He's two months.' I said, 'OK, you know, we'll handle it all," He then told me, 'We're looking at $24,000 to $32,000 apiece," said Evans.
"I lost it. At that moment, I lost it. I didn't know what I was going to do," said Evans, faced with the reality that her son's only chance to hear and learn how to speak would be impossible.
Health insurance doesn't cover off-label use of prescription drugs or medical procedures, meaning the costs would come out of pocket.
Evans said she started looking online for help and came across The Cochlear Implant Awareness Foundation.
She applied for financial assistance and within the same day of her application, she received a phone call from the foundation.
They helped secure part of the implants from the implant manufacturer.
"We were so happy to help Maddox on his journey from silence to sound," said foundation president Michelle Tjelmeland, who believes he is the youngest person in the United States to receive cochlear implants.
Cook Children's Health Foundation also helped with expenses and Evan's next prayer was answered when surgeon Dr. Ricardo Cristobal, a neurotologist at the Texas Ear Clinic, offered to do the surgery.
"This is the youngest child, to my knowledge, that has been implanted in the United States. Definitely the youngest for me," said Cristobal.
He said while cochlear implants have been proven safe for babies nine months or older, they can also be done safely on younger babies, but there is a slightly higher risk.
"The anatomy is different, the younger the child. The tighter it is. It's a very small space and we have to avoid some traps, such as the nerve that moves the face is in the way and there could be bleeding. We are putting an implant in a field that's already infected with meningitis, so the implant itself could become infected, too," said Cristobal.
"It's a little bit of a special situation that the parents have to understand, but this is the only chance that the child has to be in the hearing world."
"If I didn't do it, he wouldn't hear or speak his whole life. I mean, so what choice do I have? What do we have to lose?" asked Evans.
The surgery happened a day later and it was a success.
Now, five months old, Burgess is still deaf but the implants, when connected with the transmitters in the headband, help his brain process sound and speech.
As he gets older, he'll lose the headband for much smaller earpieces and doctors expect Burgess will be able to hear and speak like other children his age.
Evans and her family are learning American sign language for the times when Burgess doesn't wear his external earpieces.
"God answered every prayer we have," said Evans.
Cristobal said he's seen an increase in cases of meningitis leading to hearing loss in children and hopes that the cochlear implants will soon be FDA-approved for younger babies so that the costs will be covered by health insurance.
