ANN ARBOR, Mich. – Baby Xander has defied the odds. Doctors said he wouldn’t survive the pregnancy.
Now, at 15 months old, he is battling a rare disease.
He spent more than a year at C.S. Mott Children’s Hospital. The little fighter is now home in Flat Rock after 450 days.
This week also marks Xander’s sister’s birthday, and the best gift is having him at home.
“One of the first times where she got into his crib or could hold him, it just made my heart so happy to see them interact,” said Alesia Zeh.
By all accounts, little Xander is a miracle baby.
“I was about 10 weeks pregnant at the time, and our doctor had told us that I had two weeks left of the pregnancy. That these babies don’t survive. They don’t make it to birth,” said Alesia Zeh.
“But when we went to Mott’s, they immediately changed our perspective, and they gave us a new hope,” Bradshaw Zeh said.
At just 15 months, Xander has faced more than some do in a lifetime.
“He has gone through five or six major surgeries throughout his life, and even we got a cancer diagnosis when he was about six months old. So he’s even undergone chemo and liver resection surgery,” said Alesia Zeh. “He’s stronger than anyone, anyone we know.”
Xander has trisomy 18, a rare genetic disorder caused by having an extra copy of chromosome 18 that can lead to severe disabilities. There is no cure.
“During the early days, it was crucial. He just day three had a surgery. He just kept checking boxes. And that momentum really kind of built on to where we started to believe, like, okay, he’s gonna make it,” Bradshaw Zeh said.
Xander spent 450 days at C.S. Mott Children’s Hospital in Ann Arbor.
“We were living kind of at our house, at the Ronald McDonald House, also at the hospital,” said Alesia Zeh.
“It was the little things we talked about, where are we going to sleep tonight? Where are we going to eat? You know, like, those decisions that you take for granted,” Bradshaw Zeh said.
“And then from there it was, who’s doing Kennedy’s bedtime? One has to do Kennedy’s bedtime. One is with Xander for bedtime, and we would switch day after day,” said Alesia Zeh.
But day by day, Xander beat the odds and started to improve.
“We fully are aware that without their intentional support, that we probably aren’t here today, we probably aren’t having this conversation,” Bradshaw Zeh said.
As the doctors and nurses at Mott Children’s cheered, Xander was finally discharged.
Bradshaw Zeh said the moment was overwhelming and surreal.
Now at home, the Zeh family is adjusting to a new normal.
“He needs extra pressure to help him breathe. He’s not on oxygen, it’s just room air, but it helps open up his airways to help him breathe,” said Alesia Zeh.
And they are grateful for every precious moment
“The first time we took him on a stroller ride was the biggest deal. The first time he smiled, it just your heart explodes, right? The first time we got to hold him. And these are things that most people don’t take a second look at, right?” said Alesia Zeh.
The Zeh family wants other families to have hope. They point to numerous studies that show that with life-saving care, many kids make it past their first birthday. Additionally, they said social media helped them connect to other parents facing the same battle.
Resources can be found with the organizations Abel Speaks and Extra To Love.