‘Super Cooper’: Baby born with rare disorder in Kentucky

September 3, 2018
In this Wednesday, Aug. 22, 2018 photo, Allison McElvain holds her son Cooper, at their home in Owensboro, Ky. Cooper was born Feb. 18 at Owensboro Health Regional Hospital. The baby was sent to Norton Children's Hospital after he was born and was diagnosed with the rare disorder CHARGE syndrome. The family calls Cooper "Super Cooper" and "Cooper the Trooper." (Greg Eans/The Messenger-Inquirer via AP)

OWENSBORO, Ky. (AP) — His family calls him “Super Cooper” and “Cooper the Trooper.”

Cooper McElvain was born Feb. 18 at Owensboro Health Regional Hospital. The little guy’s life has been anything but simple or normal.

To start, blocked nasal passages kept him from breathing. Babies can’t breathe through their mouths during the first few months of life, so doctors quickly inserted a tube in his throat so he could catch his first breath.

That foreshadowed more to come.

The next day, Cooper was flown to Norton Children’s Hospital. The diagnosis: Cooper, the son of Wayne and Allison McElvain of Owensboro, has CHARGE syndrome, a rare and life-threatening genetic disorder that affects one in 10,000 children.

He stayed at Norton Children’s 109 days, coming home June 7. During that time, he endured four surgeries. At least four more are in the offing.

Cooper has never suckled.

He is considered deaf and blind.

Because of his tracheotomy, he can’t cry out loud, so his mother’s ear is constantly tuned to the sound of his breathing. The rhythm changes when he’s upset, she says.

But, perhaps worst of all, he has no thymus, a lymphoid organ key to a strong immune system.

At 6 months old, Cooper requires a medical team of 16 doctors and three nurse clinicians, not counting his physical and occupational therapists. A calendar on the family’s living room wall is filled with his medical appointments and reminders about his weekly immunoglobulin infusions.

In the living room, Allison McElvain cradles Cooper -- her first child -- close to her chest. A suction machine sits on the floor next to her chair. Many times an hour, she reaches for the plastic tube that sucks mucous and other secretions from Cooper’s throat.

It’s now second nature for her.

Her rest comes in fitful snatches. Cooper doesn’t sleep more than five hours straight a night. During that time, she wakes to suction his throat and feed him through the tube in his stomach.

Even when her eyes are shut, her ears are wide open. She’s on constant vigil.

Caring for Cooper brings a new perspective to life, she says. “He has changed who I am as a person. It’s definitely for the better. Every day is a gift for everybody, but especially for him.”

Everything seemed normal

Fifteen weeks into the pregnancy, the McElvains learned they were having a boy. Cooper is Wayne McElvain’s second child. His older son, Chance McElvain, 17, is a senior at Apollo High School.

During pregnancy, nothing seemed out of the norm. Frequent ultrasounds didn’t show anything. The McElvains and doctors suspected nothing.

Three weeks before Allison McElvain’s due date, her amniotic fluid started to leak one Saturday afternoon. A trip to the emergency department confirmed it. A medical team broke her water and induced labor.

At 3:10 p.m. the next day, she gave birth to Cooper, who weighed a healthy 5 pounds 12 ounces.

His maternal grandmother, Paige Higdon of Owensboro, was a trauma nurse for many years. “I knew something was wrong when he didn’t pink up,” she says.

While most moms cradle their newborns soon after birth, Allison McElvain couldn’t hold Cooper until the next day. Even then, she held him only 10 minutes before he was flown to Norton Children’s. She didn’t hold him again until he was 5 days old.

The new mom’s hopes of breast-feeding were dashed, too.

Since Cooper can’t breathe through his nose, he can’t nurse from the breast or a bottle. Instead, he eats through a feeding tube.

His mom hoped her breast milk -- designed by nature just for her child, or so she thought -- could be given to him instead of formula. For Cooper, it seems, nothing is simple.

“My immune system would attack his through my breast milk,” she says.

In a twist of nature, her breast milk could prove deadly, so the medical team quit giving it to him after seven days.


Dr. William Tse, medical oncologist and hematologist for Norton Children’s and University of Louisville Physicians, is one of Cooper’s doctors. Tse has treated only two CHARGE patients in the past 20 years.

“It’s a very rare syndrome,” he says.

It affects the development of organs in the neck and chest region, such as the thymus and heart. CHARGE also causes cranial nerve abnormalities, deafness, blindness, esophageal defects and other problems.

During the first two years of life, CHARGE patients suffer from increased mortality rates, but they can live normal lifespans.

“Although there are many problems, children with CHARGE can survive and become healthy, happy citizens,” according to the CHARGE Syndrome Foundation.

Without a thymus, Tse says, Cooper’s immune system is severely compromised. Duke University is the only medical institution in the U.S. with a thymus transplant program. That medical procedure offers the greatest hope for Tse’s young patient.

Thymus cells are taken from a healthy donor and injected into a patient, where those cells multiply, aggregate and essentially form an artificial thymus.

“It’s amazing work,” Tse says.

At this time, Duke University is restructuring its program. Tse hopes that process is completed in September so they can perform a thymus transplant on Cooper.

The sooner, the better, Tse says, but he fears something else could cause a delay. “There may be a waiting list. There are other patients who need the procedure.”

The second-best treatment for Cooper would be a bone marrow transplant.

In the meantime, Tse praised Wayne and Allison McElvain for the excellent care they provide their son. He now weighs 11 pounds 6 ounces and is doing well.

Cooper the Trooper can’t do a lot of things other 6-month-old babies do, but his eyesight is improving. He can track objects held close to his face.

And he smiles now.

Living in a bubble

The McElvain family takes every precaution to make sure Cooper isn’t exposed to germs or bacteria that can cause life-threatening infections. Despite their efforts, he was hospitalized earlier this month with an infection.

Doctors’ offices allow the family to come into clinics the back way to avoid waiting rooms full of sick patients, and the couple always asks to be the first appointment of the day to ensure doctors and nurses haven’t touched other patients before they see Cooper.

Before he came home from Norton Children’s in June, his dad replaced all the flooring in the house with easy-to-clean laminate. He caulked around baseboards to keep air flow into the home at a minimum.

Wayne McElvain worked all day at the Daviess County Animal Shelter and then came home to work on the house at night.

The couple’s home has bottles of Purell hand sanitizer in every room. They use specialized disinfectant wipes to clean surfaces.

If anyone visits who has been in contact with the public, the family asks them to wear gowns and masks to hold Cooper.

And Allison McElvain no longer kisses anyone hello or goodbye -- except her husband -- because she doesn’t want to chance passing something along to Cooper.

“It’s OK for me not to kiss her because of (Cooper),” Higdon says. “But, then again, she’s my baby.”

Changing lives

All babies bring change to family dynamics and households. However, Cooper’s medical issues magnify everything at least tenfold.

Before his birth, Allison McElvain worked at Credit Bureau Systems. Unlike other career women, she didn’t return to work a month or two after giving birth. Cooper needs care 24/7. He is her new full-time job.

“It blows my mind how much she dove into the medical aspect of everything,” Wayne McElvain says of his wife.

He has a new appreciation for her now.

Cooper’s medical issues brought their family closer, the couple says.

Like most homes with a new baby, photos of Cooper dominate the family’s living room. There’s one showing the first time Wayne McElvain held his son, and there’s a 5-by-7 picture of Super Cooper’s first smile. Marking those milestones is important for the McElvains.

“We don’t take the little things he does for granted,” Allison McElvain says. “They mean so much more to us because we didn’t know if we would experience that.”

Renee Beasley Jones, 270-228-2835, rbeasleyjones@messenger-inquirer.com

The “Cooper is a Trooper” GoFundMe account was set up to help offset the expense of caring for Cooper McElvain.

To donate, go to https://www.gofundme.com/cooper-is-a-trooper.


Information from: Owensboro Messenger-Inquirer, http://www.messenger-inquirer.com

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