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Published November 07, 2012, 11:40 PM

‘A nightly fear’: Moorhead family seeks answers about baby’s sleep disorder

MOORHEAD - For two years, 5-year-old Austin Hill added “and please bring us a baby” to his nightly prayers with his mother. A few months after he was born, the baby Austin and mom Laurie Hill of Moorhead prayed for started having breathing issues.

By: Meredith Holt, INFORUM

MOORHEAD - For two years, 5-year-old Austin Hill added “and please bring us a baby” to his nightly prayers with his mother.

A few months after he was born, the baby Austin and mom Laurie Hill of Moorhead prayed for started having breathing issues.

“He would cough until he turned blue, and that really scared us,” the 41-year-old woman says.

In his short life, Brayden Hill has been hospitalized a total of 28 nights for recurrent central apneas, rhythmic movement disorder and a condition causing airway obstruction.

He has other symptoms, too, such as what seems to be an occasional lazy eye, a skin condition and seizures.

He’s had three hospital stays at Sanford Health, one at Children’s Hospital in St. Paul, four trips to Mayo Clinic in Rochester, and he’s scheduled for a spinal tap Monday at Mayo.

Yet the family of four still doesn’t know what’s causing Brayden’s health problems.

“The doctors say we’ll just keep chipping away until we figure it out,” Laurie says.

Watching the monitors

On the night of May 4, Brayden’s apnea monitor went off for the first time in the two months he’d been on it.

Laurie hollered for her husband, Jason, who immediately came running down the hallway.

“The light was red, and I’d shaken him three or four times, and you’re supposed to say his name as you’re shaking his chest, and he wasn’t waking up,” she says. “I just panicked.”

By the time his father entered the room, Brayden had started to sit up in his crib and was smiling at his frightened parents.

“It was a half-smile, and it was probably the best smile I’ve ever seen,” Laurie says. “That smile is what keeps me going.”

Later that night, emergency room staff said he was fine but that he’d had a “spell.” He had another at 3:30 a.m. in the hospital.

“The next day, we had him baptized,” Laurie says.

While he’s sleeping, Jason and Laurie Hill’s baby boy stops breathing an average of 16 to 31 times an hour for 9 to 11 seconds each time.

“My biggest fear is not being able to resuscitate him at night if needed. I think about it every night while I’m in bed. I awake several times a night to check on him and make sure that he’s breathing and he isn’t tangled in his cords,” she says.

According to MedlinePlus, a service of the U.S. National Library of Medicine and the National Institutes of Health, a normal resting heart rate for a 6- to 12-month-old is 80 to 120 beats per minute. Brayden’s is around 55 to 60.

“I know it’s half of what it’s supposed to be, which still makes me think something’s wrong with his heart, but (doctors) keep saying his heart’s OK,” Laurie says.

When Brayden stops breathing, the apnea monitor’s alarm goes off after 20 seconds. The oximeter sounds if his oxygen falls below 85 percent or his heart rate below 50.

The monitors go off an average of two to five times a night.

“I lie in bed and watch him. I can see his chest stop moving, and I count the seconds,” his mom says.

She lies awake at night wondering whether Brayden will have an episode, and if he does, whether she’ll be able to wake him up, and if she can’t, whether she’ll be able to perform CPR, and if that doesn’t work, whether the ambulance will get there in time.

“Bedtime used to be a luxury for me – getting into a warm bed and resting after a long day – and now it’s the worst part of my day,” she says.

The Moorhead family is currently waiting for results from genetic testing.

“We’re kind of at the point where we’re like, ‘Where do we go next?’ ” Laurie says. “I’m not sure where we’ll end up, but hopefully the genetic testing will tell us something.”

Keeping the faith

The fear of losing her son causes tremendous anxiety for Laurie.

“It’s a daily fear, or a nightly fear, I should say,” she says.

The family’s medical roller coaster has taken a toll on Austin, too.

He helps set up and turn on his brother’s machines at night, but he’s having a hard time watching what he’s going through.

“He cries when he sees Brayden crying because he says he hurts for his brother, so then I have both of my kids crying,” Laurie says.

Brayden’s eyes light up when his older brother enters the room, and the two enjoy playing together on the floor of the family’s living room.

“Nobody else can get Brayden to laugh like Austin can,” Laurie says.

She says her faith and the support of her husband, family and friends have helped give her the courage to keep going and continue to seek answers about their child’s health.

“I need to make sure I’m doing whatever I can to keep my baby alive,” she says.

Laurie recalls a dark moment alone in a hotel room kneeling down and praying to God to give her strength.

“I got up, and within five minutes I said to myself, ‘You know what, you’ve got a husband and two kids who need you, you need to get your butt back over to the hospital,’ and I did,” she says. “I truly believe that God has helped us.”

Brayden’s medical supplies and medications add more than $200 to the family’s monthly bills, and Laurie cut her work hours from 40 to 32 to take him to appointments.

Ashley Peterson, who’s worked with Laurie at Cass County Social Services for four years, says she has “a steadfast faith in God and a gentle, sensitive heart.”

To help defray the family’s mounting medical costs, Peterson and several other friends and co-workers helped organize a benefit in Brayden’s honor.

“Despite her own family crisis and the toll it has taken on her zest for life, Laurie’s concern and empathy for others remains constant,” Peterson says.

How to help

  • A benefit will be held from 8 a.m. to 2 p.m. Saturday at First Lutheran Church, 619 Broadway, Fargo, featuring a rummage sale, bake sale and silent auction. Dakota Medical Foundation will provide up to $5,000 in matching funds.

  • A spaghetti dinner will be held from 5 to 7 p.m. Nov. 15 at Bethesda Lutheran Church, 401 40th Ave., Moorhead. To-go boxes will be available.

  • Monetary donations can be made at Gate City Bank, 305 8th St. S., Moorhead, or online at www.dakmed.org/lendahand. Click on “DONATE.”

  • For more information, call Tracy LaMont at (701) 371-5339 or email benefitforbrayden@gmail.com.

Readers can reach Forum reporter Meredith Holt at (701) 241-5590