“Chilling” Moments Lead to Life-Saving Answers

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Making a 911 call for a child can be a parent’s worst nightmare.

Michael Ribera undergoing an infusion at Connecticut Children’s with his mom, Meagan, by his side.

For Meagan Ribera, dialing that number became a reality on October 26, 2012, when her son, Michael, experienced severe breathing problems.

“He didn’t look good, and he didn’t sound good,” said Meagan, who was at home with him that day. “He has trouble with his speech, so it’s hard for him to try to put into words what is wrong. I looked over at him and he said, ‘I can’t breathe. I need doctor.’ When he put those words and those sentences together, I knew he was in trouble.”

Leading up to that moment in time, no one could tell Meagan or her husband, Robert Ribera, what was wrong with their child. They had taken him to doctors across New England without getting an answer. What they did know was that Michael had multiple issues: He was blind in one eye and had 20/400 vision in the other; he was born with a hole in his heart; had orthopedic problems; multiple cardiac concerns; developmental delays; cognitive delays; and a speech disorder called childhood apraxia of speech. But worst of all, he suffered constant severe respiratory problems.

“He was pretty much chronically sick for the first eight years,” Meagan said.

When Michael started breathing noisily that day and began to turn gray, Meagan called her husband, who advised her to call 911 immediately. As she spoke with the 911 operator, Michael threw up, had a seizure, and lost consciousness. “I was sitting on the kitchen floor crying, holding him. I remember I had the phone on speaker, and I was screaming, ‘He’s dying!’ I thought he was dead in my arms,” she said.

Respiratory Issues Unmasked

Michael representing Connecticut Children's at a community event.Thanks to the skilled medical staff at Connecticut Children’s Medical Center, Michael survived that chilling incident, but there was still no answer as to why he was having respiratory issues. Then, at his next regular appointment, Michael was referred to Nicholas Bennett, MBBChir, PhD, who had just joined the staff.

“Once I saw him, I could see the problem,” Dr. Bennett said. “It was one of those situations where I walked into the room and said, ‘I know exactly what’s wrong with your son, and I can get him better.’”

Dr. Bennett had looked at Michael’s immunology tests and recognized hypogammaglobulinemia, a rare disorder that compromises the immune system and was responsible for his respiratory problems. More sophisticated genetic tests revealed that he also had oculofaciocardiodental syndrome (OFCD). Michael is one of only a handful of boys to survive with OFCD, and is the only boy known to have both OFCD and hypogammaglobulinemia.

To treat the respiratory problem, Dr. Bennett started Michael on immune globulin, which is delivered intravenously in four-hour infusion sessions once a month. The results were both rapid and dramatic. Within two or three weeks, his respiratory problems had vanished. He no longer suffers massive breathing crises, and he is able to go to school without losing months to his illness.

“It took me two years before I could see Dr. Bennett without crying,” Meagan said, “because he literally saved Michael. This simple little drip has been so life-altering; it literally saved my child’s life.”

Michael Ribera, who was named Connecticut Children’s 2018 Children’s Miracle Network Hospitals Champion, was all smiles at the celebratory kickoff April 4th. Michael is pictured here with his parents, Meagan and Robert, his sister, Emma, and the 2017 Miss Connecticut, Eliza Kanner.

World-Class Care Close to Home

Now 13, Michael, who was named a 2018 Children’s Miracle Network Hospitals Champion, is one of the children who will benefit from a new Infusion Center at Connecticut Children’s, where a fundraising campaign is now underway. A Dialysis Center is also planned at the Medical Center, where outpatient dialysis services will be geared toward pediatric patients awaiting transplant, the first facility of its kind in the state.

Both centers will provide children throughout the state and across the region with world-class care close to home.

Enter the “Chill Zone”

To help provide world-class care for children like Michael, Cumberland Farms is once again hosting its “Cups for Kids” campaign. Participating Cumberland Farms in Connecticut and Western Massachusetts locations will donate five cents from every Chill Zone (fountain and frozen) beverage purchased during the month of August to benefit patient care at Connecticut Children’s.

This will be the seventh year that Cumberland Farms has supported Connecticut Children’s through its “Cups for Kids” campaign, raising an amazing $129,623 in the process.

Be sure to get your “chill” on at participating Cumberland Farms now through August 31 and support life-saving care at Connecticut Children’s for patients like Michael!

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