Newlyweds bond over special needs baby

Savanna Johnston, center, holds her son, Jaxon, and niece, Emma Potts. Jax is struggling with a series of debilitating medical ailments, but he still manages to smile.

Photo by Charlie Denison

Jax smiles and laughs at home on Roundhouse Road Monday afternoon.

Photo by Charlie Denison

Charlie Denison

Jax Johnston has experienced a lot in his first four months of life.

From the beginning, young Jax has suffered from a horrifically large amount of physical ailments, worrying his mother, Savanna, and father, Dev, as they’ve tried their hardest to get him the care he needs.

When Jax was born on Feb. 14, he was full-term, weighing seven and a half pounds, but his weight started to drop. By two months, he was only seven pounds, and at one point he was down to six pounds.

“You could tell he had a recessed jaw, but you couldn’t tell the extent of it at the time,” Savanna said. “I was informed he had cleft palate and what the doctors believed was the Pierre Robin sequence. That’s when your tongue falls back into your throat and blocks your airway.”

According to the National Organization for Rare Disorders, Pierre Robin Sequence is characterized by an unusually small lower jaw, respiratory distress, feeding problems and cardiovascular and lung conditions.

Jax has all these and more.

“This is a pretty rare disorder that can happen sometimes when genetics don’t line up,” Savanna said.

That might explain some of it, but Savanna said she’s not sure it explains everything. Jax also has reflux of the kidney, severe aspiration and spots on his brain. He has to stay hooked up to an oxygen tank, constant drip feed and an oximeter 24/7.

“When he tries to drink anything orally, it goes down his trachea and fills his lungs,” Savanna said, “He starts drowning himself. He’ll arch his back and scream in pain.”

Terrified, Savanna took Jax to hospitals all over: Central Montana Medical Center, Billings Clinic and eventually Seattle Children’s Hospital, which Savanna said is one of the top Children’s Hospitals in the nation.

Getting him there, however, was a major challenge. While in Billings, he went unresponsive more than once, his heart stopping completely.

“There was one time he stopped breathing for a good 60 seconds,” Savanna said. “That’s when he was taken to a children’s hospital, which I’d been saying he needed since day one. It was a big fight to get him there, but it finally happened. They flew him out and we were there for about two to two and a half weeks.

When released, the medical staff insisted Jax and the family stay close, so Savanna took her son to her father’s house in Medford, Oregon.

Jax was doing great for about a week, Savanna said. Dev took some time off work and met them there, but the day he left, Jax had a seizure.

“He started thrashing back and forth and his eyes rolled back,” Savanna said. “He started choking and not breathing and nothing we did seemed to help. I gave him mouth-to-mouth, blew on his face, I laid him on the table and tried breathing for him. I had to call 9-1-1 and could hear myself yelling over my dad’s scanner that he was going to die and to please hurry. It was the most awful feeling.”

The next day, Jax returned to Seattle, where he had another seizure.

“The nurses and physicians got there right away,” Savanna said. “I held his hands while they tried to save him.”

Although Savanna said she has faith in the extensive care team watching Jax, the fear would not go away, especially when doctors told her they didn’t know if Jax would survive.

“There was this terrible chain of events that kept happening to set off a seizure and his whole body would go crazy,” Savanna said. “The medical staff needed to figure out how to feed him without him having such bad acid reflux.”

Neurologists, urologists, gastroenterologists, otolaryngologists, craniofacial pediatricians, dieticians, feeding therapists, craniofacial social workers and consulting physicians looked at Jax and made expert assessments. In order to prevent the seizures, the medical team recommended surgery to hook Jax up with a G-J tube. The surgery was very trying, as Jax stopped breathing and fell into a coma. Compressions were done and the staff got him breathing again, but they hooked him up to the intubator for the night. When he woke and the tube was removed, Savanna was by his side, and she said he acted “like nothing had happened.”

“He was so happy,” she said. “He was smiling and thought everything was so funny. I was like ‘what the heck, kid?’”


A life-changing experience

Despite the hardships and heartbreaks, Savanna and Dev said they wouldn’t change anything about this experience, as they love Jax more than they ever imagined they could love anyone. Both say they have changed and grown through this experience.

“It’s all worth it,” Savanna said.

“Even with his ailments, he’s perfect,” Devon added.

Savanna’s mother, Lisa Railton, said she is also grateful for Jax and is very proud of her daughter.

“She’s been so good,” Lisa said. “She was amazing during pregnancy and has been amazing since he’s been born.”

Savanna and Dev have done a remarkable job working together, Lisa said, which makes her especially happy since she is the one who encouraged her daughter to go out with him.

“He used to come in and flirt with me at a restaurant all the time,” Savanna said, laughing. “Now here we are.”

In October, Savanna and Dev got married, and their relationship has continued to strengthen. Lisa said, as do their parenting skills.

“Dev is an amazing dad,” Lisa said. “He comes in after working all day and takes care of Jax.”

“Dev wakes up in the morning, makes bottles, plays with him, goes to work, then holds him and hangs out with him the whole time.”

There are many sacrifices involved with such special needs parenting. This has especially been the case for Savanna.

“I’ve been there through all of it,” Savanna said. “Dev has had to work. He doesn’t want to miss anything, but there are bills to pay and I have to stay at home.”

Keeping Jax hooked up to the oxygen tank, placing a tracheostomy tube through his neck to provide an airway to the lungs, hooking him up to an intubator, keeping up with all his medications, unique feeding processes and all the other needs, Savanna has much work to do, but she doesn’t complain, as she said she’d do anything for her little “bummum” and he’s doing all he can to stay strong.

“He takes this like a champ,” Lisa said.


Grateful for support

Savanna and Dev are also staying strong, thanks largely to an abundance of support from family, friends and the community. Lisa, Savanna’s sister Mandy Potts, and Mandy’s daughter, Emma, have all done a lot to help, among others, Savanna said.

“We appreciate all the support we’ve received,” Savanna said. “He definitely has the best care.”

But there is a lot still left to do and Jax’s survival remains in question.

For those interested in helping Jax and the Johnstons, go to their Facebook page, “Hope for Baby Jax” or call Savanna at (406) 366-9495.




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