For the parents of Baylie Grace Newcomb, who was born April 30, life has been anything but normal the past few months. Shortly after Baylie was born, doctors discovered that Baylie had a rare syndrome, so rare that it doesn’t even have a name.
Baylie, who was born at Newman Regional Health to Julie and Don Newcomb II, gave off signals as soon as she was born that something was wrong. Her parents didn’t hear that first cry. Something was terribly wrong. After a couple of minutes and some coaxing, Baylie took that first breath. Soon after being taken to the nursery, hospital workers knew there was more that needed to be done and prepared to transfer her to Children’s Mercy Hospital in Kansas City.
As Baylie’s mom was in recovery after giving birth, Baylie was being prepared for flight by helicopter to Children’s Mercy, where she spent the first three months of her life.
After Baylie arrived at Children’s Mercy Hospital, several tests were performed in an attempt to find out what exactly was wrong. The physical signs pointing to something wrong were extra digits on Baylie’s hands and feet and her very high palate. Baylie underwent genetic testing to determine what some of her doctors already suspected. There is no name for Baylie’s syndrome. There are no cases. There are no research studies because it is so rare.
Baylie has been diagnosed with Partial Trisomy 4p/Partial Trisomy 13q. Both are chromosomal disorders. According to Baylie’s web site, doctors often compare Baylie to a full-blown Trisomy 13 case. Trisomy 13 is a syndrome associated with the presence of a third (extra) number 13 chromosome. It is associated with multiple abnormalities.
According to Baylie’s web site, doctors tell Baylie’s parents she is expected to live a maximum of a year. But her parents are taking life day by day instead of looking at the big picture.
“It’s definitely hard,” Julie Newcomb said. “We just continue to pray for the strength to just get through it all and ask for direction in getting the care that she needs. That’s why I continue every day on the web site to ask for people to pray for her and her health.”
Baylie has made improvements recently. This week she was taken off the continuous positive airway pressure machine or CPAP. According to Wikipedia, an online encyclopedia, a CPAP machine delivers a constant stream of compressed air through a face mask and hose, splinting the airway (keeping it open under air pressure) so that unobstructed breathing becomes possible.
Baylie now is back on a nasal cannula, which is a device used to deliver supplemental oxygen to a patient or person in need of extra oxygen. It is a plastic tube that fits around the head of a person and a set of two prongs are placed in the nose.
Baylie and her family have spent most of the past four months at Children’s Mercy. She went home for a while, but at the beginning of August, she ended up back at Children’s Mercy. Julie Newcomb spends her time in Kansas City with Baylie. Don Newcomb stays at home and takes care of the couple’s 2-year-old twins, Chloe and Penelope. With gas prices still through the roof, Don Newcomb usually goes up on the weekends.
Julie Newcomb said Baylie was just starting to learn to roll from her tummy to her left side when she was at home.
“Since she’s been in the hospital again, she hasn’t had much opportunity to do that,” she said. “We think she might possibly be beginning to teethe. She’s doing some typical age-appropriate things.”
Baylie enjoys visits from her family, Julie Newcomb said.
“When we’re all here, she’s calm and happy — until her sissies scream,” she said, with a laugh. “You can definitely tell a difference when we’re there and can spend time with her.”
But, life isn’t all happy for Baylie, especially when she’s being poked and prodded. She recently had heart surgery.
“Personality wise, she’s crankier but it’s for good reasons,” Julie Newcomb said. “She had her heart surgery two weeks ago. Since that, we could see an improvement. She doesn’t really seem to be as agitated as before. She hasn’t been quite as disturbed as far as being touched.”
Julie Newcomb asks people to continue to pray for Baylie and her family.
“Prayer is the vital thing that has gotten us through it,” she said. “People can get on the web site and see what she’s doing. It’s little answers to prayers that people have been praying for. We do just take it day by day. We look at her improvements every day and we pray for continued healing for her body. We just ask people to join us in that.”