FORT ST. JOHN, B.C. — A Fort St. John woman is raising money for her nephew and his family after discovering medical problems plaguing his unborn daughter.
Jolene Steffenhagen decided to start raising money after an ultrasound revealed multiple complications with Amber and Joseph Steward’s fourth child.
Steffenhagen said the baby has a form of spina bifida, a congenital disability in which the spine does not form or close off properly, leaving a tissue gap where the cord is exposed.
She said the doctors have not said why this happened to the baby. According to the Mayo Clinic, doctors are unsure of the cause of spina bifida, but it is thought to result from a combination of genetic, nutritional and environmental factors.
The baby was also diagnosed with inverted feet, stemming from the inability to move her ankles properly because of the malformed spinal cord.
Steffenhagen said the child has also developed lipomyelomeningocele, which can occur with spina bifida. Lipomyelomeningocele is a fatty tissue mass that can form at the open part of the spine and pull on the spinal cord, which can cause other nervous system problems.
Also due to the spina bifida, the baby has a chiari malformation, where the spinal cord is being pulled down so much that it affects the development of the skull and the cerebellum, which is being compressed, causing fluid to build up in parts of the baby’s brain.
The cerebellum is the part of the brain that controls balance.
Doctors believe they can help the unborn baby with surgery, but the Stewards only had 15 minutes to weigh their options and decided on pre-birth surgery.
Steffenhagen said the couple will need to travel to Toronto in the next two weeks for fetal surgery to repair the mass, close the spine and either slow or reverse the cerebellum malformation.
Amber will likely be in Toronto for approximately two weeks and will be required to pay for food, a place to stay and flights.
Joseph, who is from Fort St. John and now resides in Alberta, will accompany Amber on this trip, which will mean more time off of work for him.
Once she can safely leave Toronto, her doctors have asked her to stay within an hour of the hospital in Edmonton, where she has been going for checkups, meaning more travel expenses, a place to rent and being away from her family for the next few months.
Steffenhagen said the couple’s three kids, all under six, will be staying with their grandparents for the next few months, and Amber can only see them for a couple of days each month.
After the baby is born, the doctors may want to keep Amber and her daughter there to monitor them, depending on the situation.
Steffenhagen said she started a GoFundMe for her nephew because multiple people had asked how they could help, and she thought it was the easiest way.
The GoFundMe was created in the last 24 hours and has so far raised approximately $5,800 for the family.
Those who wish to help can also donate money via e-transfer to josephsteward@ymail.com.
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