When Phil and Cyndi Matthews first found out they were having twins, everything seemed rosy. The pregnancy was progressing beautifully, and the couple looked forward to bring home two little ones.
But, at her 27-week check-up, Cyndi was shocked to discover that she was 4 centimeters dilated. She was immediately sent to HighlandHospital, where she received surfactant therapy to promote the twin’s lung development. The team there began working to slow down the contractions that Cyndi, surprisingly, could not even feel, and made plans to have her transferred to StrongMemorialHospital at the University of Rochester Medical Center.
At Strong, Cyndi used gravity to her advantage, resting in a way that would buy both twins a little more protected time in the womb. A week later, though, the contractions began anew, and Cyndi delivered by C-section. Both babies — two boys, Andrew and Alex — cried, which was a good sign. Things, while stressful, seemed to be looking up.
"After all, he recognizes that I’m mommy — and that’s the sweetest, most important victory of them all."
“That was our little honeymoon period,” Matthews said.
Early the next morning, though, the honeymoon came to an abrupt end. Andrew had stopped breathing, and would have to be resuscitated. He was pronounced with a 30 percent chance for survival, and Alex, a 50 percent chance.
“Dr. Rob Sinkin relayed those hard facts,” Matthews said. “And I really appreciate his honesty. It was the most responsible thing he could do, preparing us the many, many decisions that would come down the road.”
Alex and Andrew proved to be identical twins in the truest sense: both boys had brain hemorrhages and hydrocephalus, or “water on the brain,” a condition where traumatized ventricles swell with cerebrospinal fluid, placing pressure on the brain and its delicate
tissue. Howard Silberstein, M.D., the only pediatric neurosurgeon in the area, would install a shunt to allow drainage and help to remove the excess fluid when Alex, the stronger twin, was just more than 3 weeks old.
“Dr. Silberstein saved my son’s lives over and over again,” Matthew’s said. “And beyond the surgery, there was this sense that he cared about us as parents. When he came back from Alex’s first shunt surgery, he handed us a plastic bag with a few locks from what he said was our son’s ‘first haircut.’ I treasure that.”
Sadly, Andrew, whose prognosis was graver, would die in early July; his brother Alex kept fighting for a 122-day-long stay that included multiple shunt surgeries. He was barely 5 pounds when released from Neonatal Intensive Care Unit at four-months-old, and his journey was far from over.
Alex would have a short five days home in Byron, New York, before developing an infection in his shunt; a month later, he would spend 4 days in the Pediatric Intensive Care Unit battling RSV. He would undergo 13 total shunt surgeries before his first birthday, and he still has some battles yet to fight. This March, he underwent eye surgery, and his shunt, being so small, is at risk for becoming clogged with proteins.
All the same, Matthews says he’s still her miracle child.
“His severe brain bleeding has left developmental delays were thought to keep his from ever recognizing who I was—but that’s not the case at all. Sure, he’s behind the curve as far as some things go, but we can work through that. After all, he recognizes that I’m mommy — and that’s the sweetest, most important victory of them all.”
Alex, now starting to walk, and talk, enjoys listening to Dr. Seuss books, building with blocks, and Golisano Children’s Hospital’s fish aquarium. He gives hugs and kisses, and most amazingly, finds reason to keep on smiling about, and exploring, the world.
Miracle Weekend festivities
Cheering on kids like Alex is just part of the celebration planned year’s Miracle Weekend, to be held Friday and Saturday, June 2 and 3. The weekend includes two time-honored fund-raising events to support the hospital — the 23rd Annual CMN telethon and 10th Annual Stroll for Strong Kids — plus a few mix-ins that will make this year’s festivities better than ever.
Children’s Miracle Network Telethon
This year’s telethon, produced by 10NBC and broadcast from the Strong Memorial Hospital Lobby from on Friday, June 2, and on Saturday, June 3, will bring inspirational stories from Golisano Children’s Hospital’s five Miracle Kids. Among them you’ll hear one newborn’s fight to survive 13 shunt surgeries, a teenager whose arm was successfully reattached, and a young boy’s battle to survive a house explosion.
During the event, you can help the hospital by phoning in gifts at (585) 241-KIDS.
Stroll for Strong Kids
This year’s 10th Annual Stroll for Strong Kids offers plenty of family fun, including clowns, inflatable toys, raffles, door prizes, free lunch courtesy of Subway and a concert by Gary the Happy Pirate.
What’s more — if you can keep a secret – the hospital is throwing a surprise party for loveable mascot, Sandy Strong, during the scenic 2-mile walk through GeneseeValleyPark in Rochester. Expect more than 26 sheet cakes and one super-chorus of “Happy Birthday” at the starting line.