(RIGBY) – His doctors call him The Energizer Tayt.
Initially not expected to live past three months old, Tayt “keeps going, and going, and going,” said his mom, Chrissy Andersen. Tayt Andersen shocked everyone when he celebrated his seventh birthday last October.
The 30-pound kindergartener is unaware just how different he is from other boys his age. He just knows he’s happy to be alive and that something is terribly wrong with his heart. He even knows that some day, that broken heart may be the cause of his last breath.
Before that happens, Tayt has one wish: To go on a date with his “girlfriend,” Ellen DeGeneres, to Disneyland.
When Chrissy Andersen was 25 weeks pregnant with her second child, Tayt, doctors told her something was wrong with her son’s heart. They sent her to the University of Utah in Salt Lake City where Tayt was born at 30 weeks gestation. Andersen was immediately taken into surgery following the birth while Tayt was taken to Primary Children’s Hospital.
Tayt was born with hypoplastic left heart syndrome, hydrocephalus and spastic paraplegia, according to family friend Lori Embree. Andersen describes Tayt’s condition as not being able to pump blood to his heart or lungs.
“They (the doctors) pulled up a picture of a heart and said, ‘This is a normal heart,’ and then they pulled up a picture and said, ‘This is your baby’s heart.’ It was gone, it was like there was nothing there,” Andersen said.
Tayt had his first open heart surgery when he was four days old. It lasted more than 17 hours.
“The longest day of my life,” his mom said.
Two days later, Tayt bled internally and flat lined. Andersen said her son was dead for four minutes before doctors could bring him back to life.
“He has had nine open heart surgeries, 24 shunt revision surgeries and three other life-saving surgeries,” Embree said. “He has been life flighted 10 times, flat lined six times, and has spent more than three-fourths of his life in hospital beds at Primary Children’s Hospital in Salt Lake City, Utah. He wasn’t supposed to eat, walk or talk; yet he does all three quite well.”
Andersen said Tayt learned how to walk on his own when he was five, something doctors told her would never happen. The sweet-spirited seven-year-old is full of smiles, and hugs most everyone he comes in contact with. He doesn’t know he wasn’t supposed to live this long, and will proudly show his chest full of scars. There are dozens covering his little body.
“Chicks dig scars so he’ll be OK when he’s older,” Andersen said with a laugh full of sadness. She knows the chances of Tayt dating are slim
Tayt has been denied a heart transplant twice. Doctors are not sure Tayt’s body would even accept a new heart and getting a pediatric heart is rare. There aren’t as many children donors as there are adults. Andersen is going to try again. She meets with the transplant board in Salt Lake City on Dec. 17.
“Now we’re between a rock and a hard place because there’s nothing left for us to do surgery-wise,” Andersen said. “It’s been a roller coaster. There’s no other way to put it.”
A Family United
Tayt is the middle child of three children. His younger brother, Jace, is four and as big, or slightly bigger, than Tayt. Jace looks after his older brother, showing him how to play video games and keeping him entertained.
Gage, who is 10, becomes more protective of Tayt as he gets older. Andersen said Gage asks more questions about the doctor appointments and often wants to attend them when he can.
Andersen said the brothers rarely fight, but they still have their moments.
Jace likes to play with Gage’s video games while Gage is at school.
“He won’t let me when he gets home,” Jace said with a devilish grin.
Tayt’s father, Scott Andersen, travels from Ashton, Wyo., to North Dakota for work. Despite the fact that he and his wife are separated, he still takes care of the family and ensures Chrissy Andersen is able to stay home with the children.
“If I had to have an ex-husband, I couldn’t have asked for a better one,” Chrissy Andersen said. “Crisis situations can either bring people together or it can tear them apart.”
She described the boys’ father as hard working. Tayt’s medical bills have cost more than $4 million.
“Dad is very much involved,” she said. “He’s an amazing father and an amazing person. I do love him dearly. It’s just one of those things that – it’s hard,” she said.
Andersen spends much of her time with Tayt in the hospital. When she’s gone, her other two children are able to keep a normal life in Rigby by staying with their father or paternal or maternal grandparents.
Being able to attend the doctor appointments has made it easier to make life-saving decisions for Tayt.
“I’ve seen her learn everything,” Embree said of Andersen. “I would just be so devastated that I would forget a lot of the details. She has learned so many of the details. The girl could go in and be a heart specialist. With every decision she’s made for Tayt, she has done the research. Instead of just listening to the doctors, she has done the research and really weighed the decision.”
Andersen is close to completing her degree to be a Registered Nurse but has ruled out medical school for the time being. Right now, she wants to be there for her children.
“Do I believe that at one point in time I will bury my child? Yeah, I do,” Andersen said trying to hold back tears. “But, till that time comes, I’m his best advocate. I do believe that if he does pass away, that he’s completed everything he was meant to do here. And he doesn’t have to hurt anymore. As a parent you feel your kids are going to bury you. It’s opposite for Scott and me. We know we will probably eventually bury our child.”
Embree said Andersen has done everything she can to make her family stable throughout their lives and to embrace the days she has had with Tayt.
“She has an ability in a crisis situation to just keep a level head and I don’t know if I can do that,” Embree said. “That doesn’t mean that she doesn’t break down because she has. This is her baby. She just makes the best of everything. Her kids, for all the stuff that they’ve gone through, they’re just incredibly good, well-rounded kids.”
To pass time in the hospital, Andersen often watched The Ellen Show. By the time Tayt was a toddler, The Ellen Show became his favorite pastime. Doctors’ visits and therapy are scheduled around the show, which comes on at 4 p.m. each day. And Tayt knows it.
“It started with me,” Andersen said. “It’s kind of depressing when you live (in ICU). As Tayt, as he got older, that’s what he wanted to watch. He just loves her. He loves her cats. Even those dumb Tuesday jokes that she tells, he makes a huge deal and laughs about it.
“I think she’s just his comfort. She’s always been there and she’s always there at a scheduled time. What seven-year-old wants to watch Ellen? If we miss it, he’s not very happy. He recognizes her voice as Dory from Nemo. She’s been a blessing. It’s the one thing that makes him smile when you’re living in a hospital.”
His one wish, Andersen said, is to go to Disneyland with Ellen DeGeneres as his date.
“She’s my girlfriend and I want to go to Disneyland with Ellen,” Tayt said.
Doctors describe Tayt as “terminally ill” but no one knows how long he has. Because of this, Tayt does not qualify for the Make-A-Wish foundation.
The Andersen family, however, does not have the financial ability to make Tayt’s wish come true to take him to Disneyland. Andersen is currently trying to find a way to buy a car so she can speak to the transplant board on Dec. 17 in Salt Lake City. Her current vehicle needs a new transmission.
“As a parent, I think when you see your kid go through so much and you can’t give them the one thing they deserve, it breaks your heart. It’s almost like it’s a failure,” Andersen said.
Embree has started a Facebook page, Tayt’s Wish, to help bring awareness to his condition. She has also started a PayPal account for anyone willing to make a donation. Those wanting to make a donation via PayPal can use the email address, taytswish (at) gmail (d0t) com.
“I could write you volumes on how courageous Tayt’s mom is, how financially and emotionally strapped she is, how completely hard this has been on her, but she wouldn’t want that,” Embree said in an email.
“I’m about to sell my furniture so he can go to Disneyland,” Embree said. “He needs this wish.”
Nate Sunderland, EastIdahoNews.com
Paul R. La Monica, CNN Newswire