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Parents of Anchorage infant battling four rare genetic mutations receive clues to their own health history

Parents of Anchorage infant battling four rare genetic mutations receive clues to their own health history
Published: Apr. 5, 2022 at 10:36 AM AKDT
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ANCHORAGE, Alaska (KTUU) - Jeremy Miller and his girlfriend, Tanisha Mitchell, welcomed their son Jonah Dean Miller into the world on Feb. 14.

“Once he hears mommy and daddy around, he is always looking around for us,” Jeremy said. “He loves to hold on to mommy’s hand and when he hears my voice, he always looks around for me.”

As happy as the couple is to see their newborn, it hasn’t been without its challenges. Shortly after Jonah was born, Miller and his family noticed that his breathing was different from that of other babies around him.

It initially started to sound like a deep grunting noise. Jonah was transferred into the Newborn Intensive Care Unit at Alaska Native Medical Center, where he was born. According to Miller, the staff struggled to pinpoint an exact cause of Jonah’s grunting. The hospital suggested doing a spinal tap on Jonah, but Miller said their doctor decided against it due to Jonah being so young.

Jonah was later transferred from ANMC to Providence Alaska Medical Center, where things started to snowball.

Jonah was diagnosed with four rare genetic mutations, one of which depletes his surfactant protein B, which is needed to keep the lungs open to breathe.

“It’s the most important piece in our lungs so we can breathe, and he doesn’t have that,” Miller said. “So, they said without this protein, you know, he’s not going to make it, so we had to get him to St. Louis as soon as possible.”

Last week, Jonah was transferred to St. Louis Children’s Hospital in Missouri where he is now awaiting further treatment. According to Miller, he will undergo evaluations by staff to see if his organs can handle a lung transplant. If his body seems capable, Jonah will be placed on a waiting list.

“We have to put him on a waiting list, which is on a website, to find a pair of lungs,” Miller said. “Once they find a pair of lungs they have inspect these lungs. Make sure they are good.”

From there, Miller and his family may have to relocate to Missouri for up to two years, as Jonah undergoes treatment.

As they wait for answers regarding the next step for Jonah, they are also receiving answers to generation-old questions about their family’s health. According to Miller, St. Louis Children’s Hospital staff said that they have only ever treated four families with this genetic mutation before.

“We’ve figured out after all these years, all of our family members who’ve had severe lung diseases,” Miller said.

According to Miller, lung health problems run in his family. Jonah’s diagnosis could help determine why that is.

“It’s starting to sound like that,” Miller said. “So, even the doctors going to my dad’s blood work, they’re looking at records from our family, from the Miller family.”

As Miller waits in St. Louis, he remains hopeful, daydreaming about what the future has in store for him and his son.

“I can’t wait to go out to go get haircuts together. To go get ... whatever he needs,” Miller said. “To get us some matching shoes and matching sweaters. I can’t wait for all of that.”

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