Baby Ready for a Game Plan, While Still in the Womb

May 11, 2007

"How do you thank someone who has lifted such a weight off your shoulder, who has tended to a child with so many needs and given them complete and total healing, a future?"

This past September, five months along in the pregnancy of their son, Tristan, Cheryl Bristol and Marc Lewis received obstetric test results that piqued doctors’ concern.

“Only halfway along, imaging techniques were already able to look inside me, to look inside Tristan, and register spots on his bowels that posed threat of blockage,” Bristol said. “And immediately, we were encouraged to begin talking with a surgeon – just as a precaution.”

That’s when the couple met Walter Pegoli Jr., M.D., Surgeon-in-Chief at Golisano Children’s Hospital, who warned them that there was risk that the entire line of Tristan’s “plumbing” – from top to bottom – might have problems. Tristan would likely suffer from any number of non-random birth anomalies recognized as VATER syndrome (an acronym representing: vertebral problems; imperforate anus, where the rectum doesn’t open to the outside of the body; tracheoesophageal fistula, or a persistent connection of the windpipe and feeding tube; and renal anomalies). How many of these anomalies Tristan would experience, and to what extent, wouldn’t be known until he was born.

           

So, at a time when most expectant parents would be putting finishing touches on their home nurseries, Bristol and Lewis were talking through the what-if scenarios with Pegoli. They would need to give consent for any necessary surgeries, perhaps almost immediately after Tristan was born, and they wanted to be ready with thought-out answers.

It was time well spent. When Tristan was delivered, doctors noticed right away that his anus did not open to the outside, and that his belly looked swollen – the result of his feeding and breathing tubes being joined together, causing him to suck air past his lungs and into his stomach.

 “The first time I saw him, he was surrounded by a crowd of doctors, and his tummy was so large,” Bristol said. “As it turned out, he had more of the VATER symptoms than Dr. Pegoli had suspected. I was instantly thankful for all the conversations we’d had in advance.”

Tristan immediately underwent a 6-hour surgery to separate the two tubes (tracheoesophageal fistula), which saved his life. He then spent the better part of two months in the Neonatal Intensive Care Unit recuperating from surgeries including a colostomy, a gastrostomy, and creating a spit fistula (a hole in his neck that would help mucus to drain to the outside).

He went home for two months, only to return to the children’s hospital for more surgeries, including one to construct a new anus, and another to reconstruct his esophagus (using a part of his colon) and close his colostomy.

“That whole time, Tristan kept us on our toes,” Bristol said. “We would progress his feeding from IV and electrolytes to formula, and then he’d vomit, which was upsetting, because his surgeries hadn’t yet healed and we’d have to start the feeding progression all over again. Another time, he pulled out his gastrostomy tube, and we had to have it reinserted. Nothing was simple, even on the more straight-forward visits. The last one turned into a 22-day stay, because of these little, inevitable setbacks.”

But at last, the lineup of surgeries – so many, Bristol says, that she keeps count and has almost run out of fingers – came to an end.

“After Tristan’s final surgery, I gave Dr. Pegoli the biggest hug; I didn’t want to let go,” she said. “How do you thank someone who has lifted such a weight off your shoulder, who has tended to a child with so many needs and given them complete and total healing, a future?”

The horizon looks hopeful for Tristan. He’s a smart 14-month-old, who likes to play copy-cat; he’s learning to crawl and, after a long wait, is eating and drinking with his mouth, just the way he should.

Best of all, he’s healthy. And, he’s home.

Tristan, along with four other Miracle Kids and their families, will be honored at Golisano Children’s Hospital at Strong’s annual Miracle Luncheon, to be held at noon today in the Lilac Ballroom at the Rochester Riverside Convention Center.

Miracle Weekend highlights

Cheering on the 2007 Miracle Kids and celebrating their victories is just part of the festivity planned for Miracle Weekend, to be held Saturday and Sunday, June 2 and 3. The weekend includes two time-honored fundraising events that support the region’s only children’s hospital — the 24th annual Children’s Miracle Network telethon and 11th annual Stroll for Strong Kids.

Children’s Miracle Network Telethon

This year’s telethon, produced by 10NBC, will broadcast live from the Strong Memorial Hospital Lobby, 4 to 8 p.m. Saturday, June 2, and 7 to 10 p.m. Sunday, June 3. Viewers can expect stories of bravery, medical miracles and the power of family, and can help the hospital by phoning in gifts to (585) 241-KIDS (number is only operational during the event).

Stroll for Strong Kids

This year’s 11th annual Stroll for Strong Kids brings a beach party theme and plenty of family fun, including clowns, inflatable toys, raffles, door prizes, free lunch courtesy of Subway and a concert by Gary the Happy Pirate. Festivities begin with registration at 9 a.m. on Saturday, June 2. For more information on how you or a team of friends can be involved, please call (585) 273-5948 or visit www.gchas.org.

For Media Inquiries:
Becky Jones
(585)275-8490
Email Becky Jones