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Miracle Kids: Tristan Lewis

Ready for a Game Plan, While Still in the Womb

Tristan LewisIn September 2006, 5 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 2 months, only to return to the children’s hospital for more surgeries, including one to make him 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 a man 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.