By Lana Sweeten-Shults
GCU News Bureau
Everett McNaughton WANTED to be born. His parents, Donovan and Morgan McNaughton, were thrilled about it.
After all, their 3-year-old son and Everett’s big brother, Fergus, didn’t take the same direct path coming into the world. It was difficult for the McNaughtons to conceive a child, so they turned to in vitro fertilization, a procedure that produced five embryos.
The doctor suggested what appeared to be the healthiest one, the one that would turn out to be Fergus.
Surprisingly, the couple did not have to rely on in vitro fertilization for Everett.
“He wanted to be born. He definitely was my surprise baby,” said mom Morgan, an institutional research specialist for the Center for Innovation in Research and Teaching at Grand Canyon University who, after seven years on campus, now works remotely in Virginia Beach, Virginia, where Donovan serves in the Navy.
Everett was born in early August, and other than the typical sleepless nights and demanding schedule of a newborn, all was well in the McNaughton world.
Then two weeks later, the pediatrician called.
“Something flagged” on the immunology side of Everett’s newborn screening, he said, something he had never seen before. “We need to do follow-up tests. It’s probably a false thing, but let’s go and do the tests. ... We’ll figure this out.”
The pediatrician said he would call them in about a week.
He phoned the next day.
“We need to do the test again,” he told them.
Then he said to the McNaughtons, “Come into the office,” though the couple never made it there, re-routing after the immunologist told them, “Come here instead.”
Morgan heard the alarms going off in her head. She said to her husband. “Something’s wrong.”
That’s when they learned Everett has an extremely rare genetic condition called severe combined immunodeficiency, or SCID. It’s more popularly known as “bubble boy disease,” after David Vetter, who lived almost his entire life in a series of plastic bubbles before passing away from the condition when he was 12 years old.
Children with SCID have no functioning immune system and no protection from infections, so even a common cold can be fatal.
According to children’s research hospital St. Jude, SCID occurs in about one infant in every 50,000 live births. Only about 70 infants are born with the genetic condition in the United States each year.
Morgan said the immunologist told her and her husband, “There’s a chance at saving him. … We’re going to look at doing a bone marrow transplant. We need to do it as quickly as we can. How fast can you get to Duke? She was like, ‘We’re going now.’”
A matching bone marrow donor would be Everett’s only hope.
Within a week of that first phone call, the McNaughtons had driven 200 miles to Duke Children’s Hospital in Durham, North Carolina, ranked among the top children’s hospitals in the nation.
Their first day there happened to be Fergus’ third birthday.
“We spent the whole day going through tests, meeting the team and getting the royal treatment from them,” Morgan said. “Everybody in the family was tested to see if they could be a match, because in any bone marrow situation, a relative is the safest way to go.”
It’s where Morgan, who expressed the trauma and terror she felt as a parent, began to focus on the road ahead and what the family needed to do.
It’s also where the McNaughtons, soon after Fergus’ birthday, would find out that he would be the one giving brother Everett perhaps the greatest gift he could.
Fergus, the couple’s thriving, energetic miracle child, would himself become a miracle for his baby brother. Not only was he the only genetic match for his brother, he was a 100% match.
The doctor told the McNaughtons, “I don’t know if you can appreciate how rare that is.”
Even in families with a child who has SCID, such as the McNaughtons, the chance of a match among siblings is just one in eight.
Donovan and Morgan did not know it at the time of their in vitro fertilization procedure, but they both carry a gene change that can cause SCID and have a 25% chance of having a child with an immune system disorder. Morgan said that one or more of those other four embryos may have had SCID, and if Fergus hadn’t been hand-picked, he might have been born with SCID, as well, and not had a sibling donor to save him.
The McNaughtons were thrilled that Fergus was a 100% match for Everett, but then Morgan realized that both their young sons were facing surgery.
“At first, I was very, very upset about that, putting both my kids into this,” she said.
But she continued to look at the road ahead.
It’s hard to imagine an infant going through chemotherapy, but Everett did, for seven days.
The medical team, meanwhile, prepared Fergus for what was to come. They gave him a book that explained the immune system in a way a child might understand. They told him why they were taking his blood and sent the family home with a doctor’s kit so he could practice playing bone marrow transplant.
“He kept saying, ‘Why do they like my blood so much? Mommy, why won’t they leave me alone?’”
Morgan told him his blood is special: “We said, everybody has a job to do, and yours is the most special.”
Everyone told him, “You’re a superhero.”
“He didn’t truly understand,” Morgan said of her 3-year-old. “But he knows how a transplant works, and he knows he did a great job.”
Fergus went into surgery the same day Everett was being prepped – just two days after Everett completed his chemotherapy.
The medical team pulled bone marrow out of Fergus’ hip and, immediately afterward, let him watch Everett’s procedure, though so soon after his own surgery, he wasn’t very coherent.
“He was like, I want to hold my brother’s hand. I want to go to him,” he told Morgan. “He couldn’t walk, you know. It’s painful. But he was like, ‘It’s OK, I’ll do cartwheels. I’ll get to him.’”
Morgan and Everett, now 6 months old, have been staying at the Ronald McDonald House in Durham for more than 100 days and will remain there until Everett’s immune system grows. Once that happens, it will be time for Everett – and mom – to go home.
One of the things Morgan has been thankful for in this journey is the support her family received from GCU. She said she had been avoiding medical insurance calls, knowing the financial burden that will face the family – the cost is about $1 million for a bone marrow transplant.
The McNaughtons considered selling their home.
But when she was ready to take that phone call, the one she had been dreading, the insurance representative asked her, “Did you know your employer has transplant insurance?”
“It’s definitely something I’m grateful for,” she said.
And grateful for her little superhero, Fergus, who recovered immediately from surgery and is “right back to bouncing off the walls and running around in his cape,” Morgan said.
He will finally get his wish, to cartwheel over to his little brother and hold his hand, the family looking to the long road ahead.
GCU senior writer Lana Sweeten-Shults can be reached at [email protected] or at 602-639-7901.
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