By Maureen Gilmer, IU Health senior writer, email@example.com
When Drs. Ben and Katherine (Kate) Mansalis look at their 10-year-old son, they see a fighter, a survivor, a champion.
A boy who’s been through so much, but who loves with his whole heart all the time.
“He is absolutely the sweetest kid in the world,” his mom says.
It’s that big heart and the skill of the Riley Children’s Health team that has kept him alive through some scary days recently, the physician parents believe.
Connor Mansalis is the center of his large family’s attention. He suffers two rare diseases – MECP2 duplication syndrome and Moya Moya syndrome. The first, caused by too much of a certain protein, causes intellectual disability and impaired motor function. The second is a cerebrovascular disorder caused by blocked arteries at the base of the brain.
The parents knew neither of these diagnoses when their son was born in 2012 when the family lived in the San Francisco Bay area. But the first diagnosis came when Connor was in the NICU shortly after birth.
“He had a lot of trouble feeding and growing, as well as low muscle tone,” Kate Mansalis recalled of her baby. “It became apparent that he was not a neurotypical child.”
CARING FOR CONNOR
Over the years, Connor has been treated at children’s hospitals in California, Oklahoma, Massachusetts and now, Indiana.
He was doing pretty well from a medical standpoint when the family lived in Oklahoma City (where Kate Mansalis still works as a hospital executive on a hybrid in-person/remote schedule).
But in February 2020, he had a major stroke and was subsequently diagnosed with another anatomic anomaly – Moya Moya syndrome – a narrowing of the carotid artery that feeds blood to the brain.
The family, which includes three other children, a host of extended family members and a caregiver for Connor, came to Indiana in August 2022 when Ben Mansalis accepted a job as vice president-chief digital officer for IU Health.
Riley Hospital’s reputation played a major role in the family’s decision to move here, the couple said.
“Our family is built around our son and his needs,” Ben said. “Connor is likely never going to be independent. Kids with rare disorders don’t have a place in this world that really understands them. And he has a rare disease times two. So, when we started thinking about where we would go, the fact that Riley Children’s has a national, and in some domains, a global reputation for caring for kids was really important to us.”
The couple, who said they found good schools for Connor and good therapists for him within IU Health, settled into their Carmel home with their large family support system last summer.
But it wasn’t until earlier this year that they learned just how important their move to Indiana was.
SAVING THEIR SON
Connor got very sick with strep throat, which turned into pneumonia, in January. They took him to Riley at IU North, just seven minutes from their house. He was seen right away, but doctors quickly realized Connor, who was struggling to breathe, needed to be intubated and placed on a ventilator.
He was transported via IU Health LifeLine to Riley’s Downtown campus, where he remained for about a week.
While there, the Mansalises met Dr. Rabia Qaiser, a Riley neurosurgeon who specializes in the treatment of Moya Moya and who had trained with a specialist in Boston whom Connor had previously seen.
“It is so nice to have a Moya Moya specialist right here and know that if Connor ever needed any other intervention, we wouldn’t have to travel,” Ben said.
Connor’s inpatient treatment at Riley in January was followed by an even more serious admittance in March, during which he was intubated for 10 days.
“It was pretty intense, but everyone was just awesome,” Ben said. “Riley has all of these renowned specialists in the hospital, and they have a developmental peds unit in the hospital that understands what happens with these kids.”
Even at IU North, there is an embedded Riley presence, and that team knew immediately what to do, the couple said. They shudder to think what might have happened if they did not have access to specialized care.
“He probably would have died,” Ben said. “When those doctors at Riley North looked at Connor – number one – they had close consultation with Riley Downtown, and they knew they needed to intubate him early. Number two, they know how these kids respond to a ventilator and anesthesia and that managing their blood pressure is different.
“I think about the IU Health promise – care designed for you,” he added. “It’s hard to design care for this kid because it’s hard to know kids like this. But all of the things they did helped us have more time with him.”
SURROUNDED BY SUPPORT
It wasn’t just how the Riley team cared for Connor, it was how they cared for each other that impressed Kate and Ben, who is also a physician.
“We live in a household of 11 people – kids and extended family – and we recently got a puppy,” he explained. “It’s a pretty active house, but everybody pitches in and takes care of one another. We are coordinating all the time.”
As a hospital chief medical officer in Oklahoma City, Kate has her eyes trained on care.
“We noticed that just like in our home, these care teams at Riley took care of one another. They were always highly coordinated,” she said.
“I still work as a hospitalist (in Oklahoma City), and I know my nurses,” she added. “I don’t know the people at Riley well, and it’s a different experience of course to be at the bedside of a family member and watch the nurses and the respiratory therapists and the patient care techs.”
As a physician, she said, she might see her patients for 15 to 20 minutes a day, write some orders, talk to family and then leave. It’s what happens afterward that is critical to the patient.
“Those care plans have to be carried forward, and it requires the human touch at the bedside,” she said.
She marveled at how attentive the staff was, not just to Connor and the family, but checking in on each other frequently and offering a helping hand.
“It was incredible to watch how supportive they were of each other, and it really helped us feel safe,” Kate said. “Connor is taken care of because there are people here who take care of each other. The culture in that hospital is really remarkable.”
SAYING THANK YOU
Ben felt so passionately about the care his son received that he spoke during a Riley One Team Town Hall in the spring, recognizing and thanking everyone in the hospital who played even a small part in Connor’s care.
“There’s this really weird thematic irony I have going on in my head,” he said later. “MECP2 is this neurodevelopmental protein that is in excess in my son’s brain. The thing it does is regulate connection and there’s a problem with the ability of his neurons to make connections. As I think about where we need to go as humans, as hospital systems, the theme of connection is embedded in the pathophysiology of my son,” he said.
“It’s like the problem he’s trying to solve. He’s trying to help his cells coordinate and connect while we are around him trying to give him those services by trying to understand and connect. I see at Riley a team that cares about delivering on the promise of the organization, and I think we are uniquely set up to do that, which I am so grateful for, and that’s part of the reason we’re here.”
Today, Connor is doing well, in no small part due to the follow-up care he has received and the in-home therapy regimen that helps keep him healthy, Ben said.
They hesitate to name team members who have been standouts this past year for fear of leaving someone out, but the couple are grateful to Riley pediatrician Dr. Christine Nix, in particular.
Dr. Nix made such an impression on 3-year-old Rebecca Mansalis that the toddler sometimes pretends to be the physician – white coat and doctor kit in hand.
Dr. Jason Espinoza, who specializes in pediatric critical care medicine, also made an impression, as did Dr. Nathan Swinger and Dr. Lauren Castaneda. And, of course, the team of nurses and other clinicians in the PICU were nothing short of amazing, the couple said.
They now sport Riley license plates on their cars, Ben said, a reminder of the pride and gratitude they feel toward the hospital, which is again ranked in 10 out of 10 pediatric specialties by U.S. News & World Report.
“I don’t think our son would be here today if it hadn’t been for Riley.”