With a mischievous look in his eye, River Masimer crawls toward a ball on the living room floor.
When he gets to it, the toddler’s face lights up with pride.
Watching her youngest son celebrate these small accomplishments, the only word his mother, Kayla Masimer, can come up with is ‘miraculous.’
“We didn’t know what the future would hold for him,” she said. “We were told (doctors) weren’t sure if he would speak or walk or do anything.”
After raising five children, Kayla and her husband Nahum were confident that they knew what to expect with her sixth pregnancy.
But at their 20-week ultrasound, they found out River had hypoplastic left heart syndrome (HLHS), a congenital heart defect that affects blood flow.
They were prepared for their son to have surgery at 4-days-old, but were devastated after he was born to find out his situation was much more critical than expected.
On top of HLHS, River had Kabuki syndrome, which made his situation extremely medically complex.
“We almost lost him three different times,” Kayla said.
Nahum had to leave Kayla at Riverside Methodist Hospital to travel to Children’s Hospital with River, where he would spend the first five months of his life.
Kayla joined them as soon as she could, promising her doctor she would use a wheelchair for a week because her body was still recovering from the birth.
That was the start of a very difficult time for their family. They were balancing the needs of their other five children with trips back and forth to Children’s, while also dealing with the isolation of the COVID-19 pandemic.
“Most of the time (in difficult times) your family and friends are there to help,” Nahum said. “But no one could come.”
After River’s second surgery was successful, he was able to go home. But when it came to supporting his needs, they felt like first-time parents, Kayla said.
“We were kind of lost, we had no idea what we were doing. It was very humbling, very quickly” she said.
River just lay on his back, staring at the ceiling. The Masimers didn’t know how to help him— until his cardiology team recommended they contact the Licking County Board of Developmental Disabilities’ Early Intervention program.
“(The team with the Board of DD), they were the first people to give us a little bit of hope,” Kayla said. “Everyone talked hope and options! They said, ‘There are a lot of things we can do.’ They were the first people to see something good could come out of this.”
LCBDD Service Coordinator Kayli McClain and LCBDD Physical Therapist Annie Green consulted with Occupational Therapist Karlie Fleak and Speech Therapist Janelle Pickens. Together they formed a team that surrounded the family, Nahum said.
“They said, ‘What do you need, how can we help?’ That was a breath of fresh air,” he said.
Not only did the therapists work to help River get stronger, but they taught his parents how to motivate him to move and play.
“They gave us the hope, but then they gave us the tools.” Nahum said.
It wasn’t easy, and progress came slowly, but it was clear that River understood what they were doing. He wanted to learn and was eager to try new things.
“He just started interacting with us. We started little by little. It started out with tiny things and my gosh we started to take off,” Kayla said. “We believe God puts people in our lives like Annie. Everything River does is taught by therapists.”
Now River is a music-loving toddler who communicates with words, signs and pictures. He loves “Bluey,” Legos and his siblings, Payton, Jordyn, Taylor, Genesis and Judah.
“He has the funniest personality,” Kayla said. “He tries to make us laugh a lot!”
Knowing River was approaching his third heart surgery in early June, the team worked hard to help River walk using a walker.
Not only did he learn to walk with it — he started running, Kayla said.
His family is hopeful that he will recover from the surgery and be home in time to celebrate his 2nd birthday. Then the team will get right back to work, helping him regain his physical strength and improve his communication skills.
River will likely need other medical procedures as he gets older and could be a candidate for a heart transplant.
But the Masimers know that their son is a fighter — and he has a strong support team behind him.
“Just to see there’s hope here, that he’s going to live a good life, that’s been everything to us,” Kayla said.
For more information about Early Intervention in Licking County, go to https://lcountydd.org/birth-to-3/. To make an EI referral, please call 1-800-755-4769. You can also make a secure online referral at http://bit.ly/ReferToHMG.