A race to save Callan
When every minute counts, MESSA’s unmatched service helps bring peace of mind
On a sun-splashed Thursday afternoon in Midland, Lisa Donovan gave birth to 8-pound, 7-ounce Callan.
Born September 17, 2020, Callan passed all of his onsite newborn tests. But just days after Lisa, 34, and her husband, Michael, 34, brought Callan home, they received a call from the pediatrician that set off a race against time to save Callan’s life.
Callan’s blood tested positive for spinal muscular atrophy (SMA), a rare genetic disease that causes progressive muscle weakness, difficulty breathing and swallowing, and paralysis. It’s the leading genetic cause of infant death.
“I was like, this has to be a false positive,” said Lisa, a kindergarten teacher at Meridian Elementary in Sanford. “He’s perfectly healthy. He had just been to the pediatrician the day before. They checked him out and everything was good. I was in denial.”
SMA happens when the SMN1 gene is missing or mutated. Without SMN1, the body cannot make survival motor neuron (SMN) protein, which controls skeletal muscle activity, such as breathing and walking.
Roughly 450 to 500 people are born with SMA each year in the U.S., and about 6.6 million Americans are carriers of the disease, the Centers for Disease Control and Prevention reports. The Michigan State Newborn Screening Laboratory began screening for the disease in March 2020, just six months before Callan was born.
“I never heard of SMA,” said Michael, a wrestling coach and health and physical education teacher at Midland High School. “We were told there’s no cure. It was kind of the worst moment of my life.”
Michael and Lisa immediately made an appointment to meet with Dr. Erin Neil, a pediatric neurologist at University of Michigan Health C.S. Mott Children’s Hospital.
The next morning, after dropping off their 2-year-old son, Kyler, at daycare, the Donovans met with Neil and a team of specialists in Ann Arbor. Neil said she uses a calming approach when speaking with parents about SMA.
“We give them reassurance that while it’s difficult, we are going to be here with you the whole way,” Neil said.
While there isn’t a cure, there is a fairly new gene therapy treatment called Zolgensma, which is made of a harmless virus that restores SMN protein in the body. Since Zolgensma is made of a virus, an infant who develops antibodies after birth cannot be treated with it because the immune system would fight it. The one-time only treatment is delivered intravenously for about an hour.
On Wednesday, Sept. 30, doctors drew Callan’s blood and sent the sample to an Ohio lab to test for antibodies. The negative results were delayed and didn’t reach doctors until the following Monday. Since the results expire after 14 days, Callan had a nine-day window to receive Zolgensma. If he didn’t get the treatment by Oct. 14, he would have to submit another blood sample, giving his body more time to develop antibodies — a risk the Donovans didn’t want to take.
Doctors told the Donovans that insurance companies usually deny cell and gene therapy claims on the first attempt. The day Callan’s results arrived, Michael called his MESSA field representative, Matt Zimmerman, and told him about the incoming preauthorization request. Zimmerman reassured him that MESSA would be on top of it.
A day went by and the Donovans didn’t hear if they were approved. It was Oct. 7.
“I started panicking and calling various people,” said Michael, who texted and called Zimmerman.
Zimmerman got on the phone with MESSA Member Service Specialist Robin Garn, who found that no preauthorization form or accompanying medical notes had been received — they had been sent to the wrong insurance company.
“I tuned everything out and focused on this,” Garn said. “If I could take one thing off their plate that they don’t have to worry about, it makes my job worth it.”
Garn worked with hospital staff on Oct. 7 and Oct. 8 to get the necessary paperwork submitted. In some cases, she was on the phone with the hospital’s billing department to make sure someone stood next to the fax machine to receive all required documents.
“At that point, between Mike and me and Member Services, we were doing everything we could to get the information,” Zimmerman said. “Every single one of these days was important.”
On Friday, the treatment was approved for Callan’s infusion on the following Wednesday — Oct. 14.
“There were just so many factors that hinged on the last step,” Michael said. “It was such a relief. We finally made it to the finish line. MESSA approving this the first time saved us a lot of anxiety. It allowed us to focus on our son.”
More than a year after the infusion, Callan is thriving and meeting all of his milestones, Neil said.
Michael and Lisa said he’s “getting into a lot of trouble” — climbing stairs and wrestling with his brother.
“As a dad, when they are born you’re thinking about how good they’ll be in sports, state championships and everything,” Michael said. “With this diagnosis I asked for one thing, I just wanted to see him walk.”
In December, Callan took his first steps at 15 months old.
“We owe Matt and MESSA for our son’s ability to walk,” Michael said.
