A queen-sized mattress takes up most of the living room floor. It’s the first thing you see when you walk in the front door. It’s draped with blue sheets and surrounded by the larger furniture on three sides, creating an island in the middle of the room. Plush toys sit next to remotes. Pillows are scattered throughout the space, and medical supplies are stacked on the sides of the mattress.
Kyle, 37, and Indy Walsh, 39, have lived out of this room for the past year. Their 4-year-old son, Kyler, has a brand-new nursery in their three-bedroom ranch house in St. Charles.
It’s never been used.
Indy had noticed seizures when Kyler was 3 or 4 months old. When he was 6 months old, doctors diagnosed him with a rare genetic disorder called FOXG1 syndrome, in which a genetic mutation causes brain abnormalities and severely impairs development. Kyler is nonverbal, unable to lift his head or support his own weight, and likely has the cognitive function of a 6-month-old. He is fed through a gastrostomy tube and requires 24-hour care. He has spent months in the hospital, since even a cold can turn life-threatening for him. About 260 people have this mutation worldwide.
One of his parents sleeps on the mattress on the floor with him every night. He used to sleep in the bed with one of them, until they worried he might roll over and fall off. On this icy night in November, it’s his grandmother, Cindy Ryon, staying with him on the mattress, waiting for his parents to return from the hospital.
Indy was shocked to learn in April that she had gotten pregnant again. She has a variation of the gene mutation that affects her ability to carry a baby to term. She had three miscarriages before Kyler was born, and two miscarriages after him.
Her oldest child, 17-year-old Ashlynn, has a different form of the genetic mutation that doesn’t cause the syndrome her brother has. When Ashlynn heard about her mother’s pregnancy, her first thought was, “Oh gosh, we’re gonna be under stress again that I’m going to have to deal with.”
The family operates under high levels of stress. Indy was fired from her job as a manager at Walmart after Kyler was diagnosed. Kyle runs his own painting business with his brother. They don’t qualify for state aid for Kyler’s medical expenses, so they are constantly juggling bills and negotiating with insurance companies. Once, the electricity was cut off during one of his extended hospital stays.
Indy, whose days and nights are spent caring for her severely disabled son, was on pins and needles during her pregnancy, wondering if their next baby would have the same mutation. Ashlynn and Kyler share the same October birth date, but Kameron wasn’t due until Dec. 9.
Then at 33 weeks, she went into preterm labor. The doctors stopped the labor, kept her in the hospital for four days and sent her home on bed rest. The next day, Indy started bleeding. She called her husband and said he needed to come home right away.
Painful contractions hit every two to three minutes during the car ride to the hospital. She was bleeding profusely. Doctors discovered her placenta was breaking away from uterine wall. She was hemorrhaging, and too unstable to transfer to a larger, better-equipped facility in St. Louis.
An ambulance whisked Kameron to St. Louis Children’s Hospital soon after he was born. He would spend 23 days in the neonatal intensive care unit while his parents waited for the results of the medical tests. It was too risky to bring Kyler to the hospital to meet his new brother.
Tonight, the Walshes were going to bring their baby home, and the brothers would meet.
Kyle laid Kameron down next to Kyler. Ashlynn stayed on the top of the mattress, above the 6-pound infant in a fuzzy bodysuit covered with blue and gray snowflakes.
“Look at him. Look at him, babe,” Kyle said to his wife. “He’s talking to him.” Indy was busy unpacking newborn diapers the size of an adult hand. “That can all wait,” her husband said. “You should watch this.”
The brothers lay face-to-face on the mattress. Kyler gurgled and made eye contact with the baby for a brief moment.
Kyle recorded a video on his phone.
Indy started talking to her older son.
“Who is that, Kyler? Is that your little baby brother? Mommy’s been telling you about him.”
She reached over to put lip balm on Kyler’s dry lips.
They are hoping the new baby will help Kyler learn and develop.
Kameron’s test results were clear. He didn’t share either genetic mutation that his siblings have.
He does, however, share one thing with Ashlynn and Kyler: the same Oct. 23 birthday.