On the Long Lake National Wildlife Refuge near the small town of Moffit, North Dakota, sits a little house near the prairie. Jared and Brenda Newton call this beautiful place their home, and it’s where they are raising their two young children: a 6-year-old boy named Case, and their 10-year-old daughter, Lilah.
About a year ago, Lilah—and the entire Newton family—began a journey that brought them to three different states to treat Lilah for a rare disease, save her life, and bring her back home.
An unexpected journey
It all started in July of 2020 when Lilah went to Nebraska to spend some time with her grandmother.
“Three days into seeing grandma she just got some kind of stomach bug and, you know … with a kid, you just think, ‘Oh, a 24-hour bug, it’s going to get better,’ and it wasn’t getting better after a few days,” said Brenda Newton, Lilah’s mother.
Lilah went to urgent care where doctors treated an intestinal infection with antibiotics. After a few more days, Lilah’s condition still wasn’t improving.
“So I brought her back to Bismarck and I was like, ‘Okay, we’ll just go straight to the ER and see if she needs fluids and maybe another antibiotic.’ I was concerned, but I wasn’t thinking something was deathly wrong,” Brenda said.
“After a couple days’ being admitted, she still wasn’t getting better. And after some blood work, they found out her kidneys were being affected and shutting down.”
Sanford doctors in Bismarck knew Lilah needed a pediatric nephrologist. And the closest one was in Fargo.
“They were concerned. So they got us on the plane and flew us there that same day we found out. (It was) Lilah’s very first plane ride. … In fact, we flew right over our house.”
After four days in Fargo, Lilah still couldn’t keep fluids in her system, and she wasn’t producing urine. Her kidneys were shutting down. She required more specialized care, this time at Sanford in Sioux Falls. She was flown to South Dakota where she began dialysis on her kidneys, which seemed to be going well.
The fight of her life
“I think it was on the third day … she was complaining of a headache, which she had had before … and during her (dialysis) run she had a seizure. Thankfully the doctor was in the room, and so the doctor was able to get medication in her immediately to stop the seizure,” Brenda said.
Dr. Justin Kastl, a pediatric nephrologist at Sanford Sioux Falls was in the room when the seizure happened. He was treating her for a rare condition called hemolytic uremic syndrome, or HUS, which causes kidney failure due to the damage it causes to the small blood vessels of the kidney.
“In Lilah’s case, she had a fairly standard course up until a certain point … but her case became complicated by what’s called an intracranial hemorrhage. And that’s actually pretty rare in this illness,” said Dr. Kastl.
Lilah had suffered a stroke and needed immediate surgery. Doctors removed her skull plate to relieve the pressure in her brain.
“For the next 24 hours she was fighting for her life,” Brenda said.
After neurosurgery, Lilah was placed in a medically induced coma. There was still pressure on her swelling brain, and her kidneys were still needing treatment as well.
“I honestly believe that there was some divine intervention with this,” said Dr. Kastl. “I prayed to God that night and I asked Him to be with us. I felt just a calmness and I sincerely felt like she was going to be okay, even when things were looking terrible. I just feel like everything went right for Lilah that night, because she was in a bad way, and things were not looking very good.”
Doctors and nurses were with her constantly.
“Sanford doctors were so wonderful. They were so caring and compassionate,” said Brenda. “There were a couple of times when we were talking to her in between the doctors working on her and just telling her to fight for her life. It was so wonderful to see those doctors work. They worked like a well-oiled machine,” Brenda said.
“We made it through the first 24 (hours) and then the next 48 and the next 72. She continually got better and her levels continually dropped; her intracranial pressures in her brain kept getting better.”
From survival to recovery
Lilah would be on a ventilator and in a coma for three weeks. Her father, Jared, had brought a camper from home, which the family had planned to live in while in Sioux Falls. But in reality, they were living at the hospital.
“I wasn’t there when she had the stroke,” said Jared. “That was pretty difficult for me to have that happen when I wasn’t there, and it made it so I didn’t want to leave her side after that. I didn’t even want to go to the cafeteria to get food because I was worried something might happen when I wasn’t there. … She was in a coma for three weeks and, you know, after what had happened, we couldn’t leave her side.”
Near the end of August, Lilah was taken off the ventilator and was awake again. She had survived the most dangerous part of her journey, but now she would need to begin her recovery. She stayed in Sioux Falls until mid-September; then the family went to Gillette Children’s Specialty Healthcare in St. Paul to begin treatment and therapy.
The stroke had cost Lilah much of the strength and dexterity on the left side of her body. And she’d need help to build herself back up.
The family spent another month and a half in the Twin Cities before Lilah was discharged on Nov. 9, three months after her stroke. She had surgery a few days later in Sioux Falls to put her skull plate back on, and then finally, more than three and a half months after Lilah went to the ER in Bismarck, the Newton family headed back home.
“It was surreal,” said Brenda. “I was like, ‘This is our house!’ You know, we’d either been living in the camper or the hospital.”
When Lilah and her family finally made it back home. They were excited to be back in their own beds and looking out at the beautiful views of Long Lake again, but they were also a little bit scared.
“We have this girl that now we have to take care of. You know, we had been having nurses and doctors take care of her for the last three months. It was like bringing home a new baby,” said Brenda.
Jared Newton says he and his wife are still extremely cautious with their little girl.
“She was fighting with her brother right away and trying to play with the pets, and wanting to go outside and get back to life the way it was before,” said Jared. “I think that was a huge benefit to her, to get back home and be able to do that. But it was definitely a struggle for us to get used to that. We still struggle with that, even with all the progress that she’s made. We’re still very wary because we almost lost her.”
A new normal
Lilah has been back home for nearly nine months now, and she spends a lot of her time at Sanford Children’s Therapies in Bismarck, working on speech therapy, physical therapy, occupational therapy and cognitive recognition. Dr. Kastl says her long-term kidney prognosis is excellent, but she will likely have lifelong issues on her left side due to the stroke.
Still, she has improved dramatically and is able to walk and even run on her own now. Her left hand and arm are getting stronger as well, and her speech has improved significantly. Her therapists have seen great progress, and the hard work and drive that Lilah has shown so far can help her immensely in her recovery.
“She’s always been competitive and had that little edge to her and I think it’s only helped her,” Brenda said. “This girl, I don’t think I’ve ever heard her say, ‘I don’t want to go to therapy.’ She just loves it. And they make it fun. They just feed off what she likes. She likes to be competitive. So those therapists are great at pushing her and saying, ‘Let’s make a game out of this. Let’s see who can win.’”
“This girl has shown us that she can do as much as she wants … but the sky’s the limit.”
After being treated in four cities in three states, Lilah Newton and her family are learning a new normal. They’re back home, but never too far away from their Sanford doctors or therapists. And now as they look back on their journey, they have a new perspective.
“Everywhere she went, we got excellent care. Everybody was very good,” said Jared. “It’s hard to take care of yourself in that situation, and the doctors and the nurses were always trying to make sure that we were taking care of ourselves as well. … I wish we never had to go through it, but to see what people are able to do—from where she was at, to where she is now, and where she will be in the future—is pretty amazing.”
Brenda Newton agrees.
“Sanford doctors have been so wonderful throughout all of this—so good about working together. No matter if we’re in Bismarck, Fargo or Sioux Falls, they all seem to talk with each other so well,” Brenda said. “We’ve never had a bad experience with them throughout this whole ordeal. So I can’t thank them enough.”
The small house on the Long Lake National Wildlife Refuge is full again. And the Newtons are all there together: Mom, Dad, a 6-year-old boy named Case, and a soon-to-be 11-year-old girl. She’s a fighter, and a stroke survivor named Lilah.
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Posted In Bismarck, Children's, Dialysis, Fargo, Neurology, Rehabilitation & Therapy, Sioux Falls, Vascular