He's a four-year-old just hoping for a kick-start toward a more normal lifestyle. He wants to do what other typical four-year-olds do. Chase Gallant Kirstein and his family are hoping that an extensive operation in a Toronto hospital next month will help put him there.
Chase has a rare condition commonly referred to as prune belly syndrome, a condition that begins during pregnancy. The fetus's bladder doesn't drain, causing stretching and backup into the kidneys, which, in turn, causes other problems.
Chase is the son of Miranda Kirstein, a former Estevanite who was born and raised in the Energy City and who attended Westview School and ECS, played soccer on the local junior teams and worked at Pizza Hut when she wasn't in school. She said she left school to "pursue a career dream in Ontario" at the age of 16, but soon the realities of life hit and she eventually returned to her home province and set the course for a new family lifestyle.
Chase, the grandson of Bev and Ron Hagel of Estevan, is a pretty eager and cheerful kid, who sometimes tries to use his affliction to gain an advantage on his siblings, Liam who is nine, Ashton six, and Chloe, who is now one. "But they make him work for it," said his mother with a chuckle.
The operation at the Hospital for Sick Children in Toronto will be a tricky one and even getting to that Ontario centre entails a lot of logistical planning since Chase is not able to fly and a train ride won't accommodate all the supports he requires along the way. His catheter needs to be replaced every four hours, for one thing, and the risk of infection is always present. An infection would delay the scheduled operation in mid-February. That means a lengthy car ride is in order. Since Chase will be in Toronto for awhile, the family is taking up residency in a small town north of the city and his mother will be staying with him at the hospital while their father Jason will care for the other three.
"The doctors don't know how long he'll need to stay after the surgery," said Miranda. But they do know they expect to perform all the necessary resetting of the internal organs in one major move. Dr. Weckworth from Saskatoon, who has been involved in earlier surgeries with Chase and recognizes the current position of all his misplaced organs, will be involved in the Toronto operation, much to the relief of family.
"They're up front about it all, there could be issues, but we have confidence in them and in Chase. He'll be going into kindergarten next year, and he just wants to go there as a regular kid. Right now if he even falls, it becomes a problem. So if we can get it so his catheter can be drained regularly and his bladder adjusted, then we can take him anywhere and not have to worry. He can have a normal childhood," said Miranda.
Prune belly is a challenging issue, and Miranda and Jason knew they were in for a challenge when they discovered during her pregnancy that most of the prune belly babies died before birth or shortly after. But she and her baby were given timely attention. Doctors drained the liquid from the baby's bladder during the pregnancy but when he was born in December of 2009, he had more than a litre of fluid in it, which distended his abdomen. That must be looked after during the operation as well as the resetting of other organs that were displaced due to the bladder's enlargement.
At this stage in his development, the bladder is now pulling on Chase's spine, which is starting to curve. That means on some days he can't even get out of bed and walking hurts due to the built up pressure and weight plus the fact that his organs are twisted and pulled.
Even with the pain and loss of mobility, Chase has maintained a sunny disposition and has become a bit of a comedian, his mother explained.
The operation will hopefully reduce the bladder's size, the abdomen will be repaired and a catheter tube hole will be created, which will make that process much easier.
The family faces some major financial pressure. Jason, the sole breadwinner in the family, will be taking eight weeks off work to tend to the family. Miranda said she has been told by others, who have had to spend time in Toronto, that the two months in and around that centre will probably come at an expense of at least $15,000.
"We received assistance from the Kinsmen Foundation in the past. We don't want to have to go to them again. They stepped up the first time. But there is only so much we can do. When we get back, Chase will have to spend another two or three weeks in Saskatoon," Miranda said.
Chase's siblings have been pretty protective of him and are making their own sacrifice to go to Ontario to be nearer to him for the weeks he'll be in Toronto. But they want to be able to return to their Regina home, too.
A family friend, Audrey Webb, who is a local cub and scout leader for older son Liam, organized a rib and steak night fundraiser and is also organizing a bottle drive to help the Gallant-Kirstein family.
Miranda said because the doctors can't give them a definite time line for their return after the operation, they're heading to Ontario with a lot of faith that things will turn out.
"Infection is the biggest concern after the operation so we have to expect we'll be there at least a week after his operation. After we get home, about two months later, we go back to Saskatoon for two or three weeks. Right now we're full of hope. It's a life changing moment for this family, but we're looking at it as a positive life changing experience, not a negative one."
Estevan and area residents who care to donate to the fundraising effort may contact Chase's grandmother, Bev Hagel at 306-461-9210 or direct financial assistance to the online assistance site www.gofundme.com/funds-for-chase
In Regina, donations may also be dropped off at the ScotiaBank south location.
