Last Christmas Eve, after more than 20 days spent at daughter Hannah’s bedside, Marsha and Tommy Coulter were called into a Texas hospital conference room faced with an unimaginable decision.
“The doctor asked us to consider taking Hannah off the vent and letting her go,” Marsha Coulter remembers. “It was one of the worst days of our lives. The worst Christmas Eve we could imagine. We cried all day and night. I begged God to keep this from happening. We were just hoping for a miracle.”
For 14-year-old Hannah, every breath was a battle. A lethal combination of a small chest cavity, an artery pushing up against her trachea and a rare, life-threatening disease that weakens the windpipe called tracheobronchomalacia had made breathing and eating increasingly difficult for the teen, who also has autism. Other surgeries hadn’t helped and few options were left.
The new guidelines call for a wait and see approach for children unless they have a fever of 102.2 or higher, significant pain, ruptured eardrum with drainage, or infection in both ears. Those patients will still receive antibiotics right away.
It’s estimated than 1 to 4 percent of children suffer from sleep apnea. Sleep apnea occurs when a child’s breathing is partially or completely blocked repeatedly during sleep.
Symptoms of sleep apnea can include loud snoring, gasps or pauses in breathing while sleeping, and restless or sweaty sleep. These children can also have daytime symptoms, including being tired, irritable or problems concentrating.
Research is increasingly showing that untreated pediatric sleep disorders including sleep apnea can wreak a heavy toll while they persist. If not treated, serious cases of sleep apnea can lead to a variety of problems. These include heart, behavior, learning, and growth problems.
Many children with sleep apnea have large tonsils and adenoids, although obesity and other medical problems can also be a factor. When a child’s tonsils or adenoids are thought to be the culprit, the most common treatment approach has typically been to remove the child’s tonsils and adenoids.
The decision to put a child through any surgical procedure is not one to be taken lightly, however, even with a procedure as common as this one.
At four years old Ava’s parents notice something different about their daughter’s behavior. In addition to being quiet and withdrawn, Ava appeared to have trouble hearing. Ava was referred to U-M C. S. Mott Children’s Hospital. Her doctor was able to explain the cause of her hearing loss and, more importantly, treat it.
Steve and Diane began noticing something different in their daughter Ava’s behavior when she was four years old. In addition to being quiet and withdrawn, she appeared to have trouble hearing. “We were at a birthday party and we were having to talk to her so loudly,” said Ava’s mother Diane. “It was so clear to the others at the party that something was wrong.” That was the wakeup call they needed.
After almost seven months of seeing various physicians and specialists, a genetic test revealed Ava had inherited two different mutated genes — one from each parent — resulting in hearing loss.
Ava’s parents were shocked. There was no family history of any hearing issues, let alone genetic hearing loss. “We were carriers. But when you’re a carrier you don’t know that you have an issue, but you can pass that genetic code onto your children.”
Until recently, little was known about genetic hearing loss. U-M C.S. Mott Children’s Hospital is one of only a handful of hospitals in the world researching genetic hearing loss in addition to treating it.
“Originally we started out a different hospital because of our health plan,” said Diane. “But once the specialist there realized what the genetic results were, he immediately said, ‘I’ve got a perfect person that you need to see over at Mott Children’s Hospital. She’s a specialist in genetic hearing loss; that’s her passion; that’s what she researches. “Which was Dr. Marci Lesperance.”
With the help of Dr. Lesperance, Ava and her parents were not only able to understand the cause of her hearing loss, but also how to treat it, which included getting hearing aids for Ava.
“Now she’s a lot more confident in social situations because she can hear what people are saying to her and respond appropriately,” said Diane. Her parents have even recently noticed Ava humming and singing along to the radio. “It’s sweet to hear her humming,” Diane added. “And it’s just fun to watch as a parent to see your child flourish.”
In addition to being able to hear, when it comes time for Ava to have a family, she now knows in detail what she carries and how it might affect her own children one day. As Diane said, “Now we feel armed with knowledge, and knowledge is power when you think about it.”
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