A five year old girl with the most severe form cerebral palsy is in need of a unique surgery in the United States after her hip becomes dislocated.
As an infant, Mikaela MacNaughton suffered strokes and had blood clots in both her cerebral arteries, the two main arteries supplying blood to her brain. This led to a massive brain injury due to a lack of oxygen.
These injuries left her non-verbal and blind, with periodic seizures and quadriplegic cerebral palsy. The condition left her with significantly diminished motor functions to the point where she eats through a tube and requires assistance to move in almost any capacity.
“She's very spastic and very stiff as a result of the cerebral palsy,” said Ruth MacNaughton, her mother. “She doesn't have use of her muscles very well at all.”
The extreme stiffness in her muscles and tendons have resulted in her hip being dislocated.
Ruth said she's in severe pain and has been hospitalized for the past four weeks and has been on morphine around the clock.
Now Mikaela will need surgery to repair her hip but the only option that's offered in Canada comes with serious drawbacks.
“The only way that they can do this in Canada is to sever the stiff tendons around the hip,” said Ruth.
“If they sever the tendons, any possible mobility will be lost. It would eliminate any possibility of using those muscles.”
So the situation has forced the MacNaughton family to seek specialized surgery in the United States by one of two physicians - who are the only ones in North America who can perform this version of the procedure.
With this surgery, physicians put holes in the fascia of the muscles and stretch them out while repairing the hip so there's no loss of function. That possibility of function is extremely important for Mikaela, explained Ruth.
“When you have a severe disability every little bit of mobility counts,” she said.
While trying to get a hold of these southern physicians, Ruth said that family has had a miracle.
“We were recently contacted by one of the doctors in Texas who was willing to book Mikaela for the surgery for next Wednesday (April 24)."
Now that the MacNaughtons have been booked to go to Texas, they have already received the bill and have to pay it up front. The estimated cost of surgery and four days in hospital is just over US $30,000.
Ruth's husband Chris will be running a fundraising campaign in May to cover those costs and he will be shaving his mustache to seek donors.
The success of the surgery and the possibility of future progress are extremely important to Mikaela and her family. To foster the progress in motor function, Mikaela has been doing a very specialized form of therapy called the Anat Baniel Method.
“This is a therapy for brain injury and neuro-movement therapy,” Ruth said.
“It's not a traditional physiotherapy and has the principal of very simple movements. It's not covered in our healthcare and there's only about 50 practitioners in Canada.”
None of those practitioners are in Yellowknife, so the MacNaughton family spent $50,000 last year bringing up a specialist from Ontario.
“We have made some gains with the therapy we've been doing with our daughter,” Ruth said.
“With this progress, she has gained some mobility in her arms. So at night, if she gets too warm, she can move her arms from under the sheets.”
If Makaela wakes up in the night and is sore or too hot and needs to be moved, she will start whimpering.
“Right now we're waking up every night multiple times a night to re-position her,” Ruth said.
“So if we do this surgery and she can gain some function, then she could potentially re-position herself as opposed to a forever lost function.
“We're not expecting her to walk, we're not expecting her to crawl, but she could be able to move to re-position herself. It would increase her quality of life and our family's quality of life significantly.”
Handmades for Mikaela
With the costs of the therapy and not being able to work as a nurse due to the high needs of taking care of Mikaela, Ruth has been working on a crafting campaign to help raise funds called Handmades for Mikaela.
Ruth has been making Yellowknife wood slice ornaments and cards while in the hospital or in therapy or while travelling to help cover the costs of therapy.
“I haven't been able to go back to work as a nurse because she requires too much care at this point,” Ruth said. “This was something I could do between here and there while travelling or in the hospital or at home caring for her.”
Handmades for Mikaela can be bought at the Down to Earth gallery, Flowers North, Rebecca's Flowers, Mother Earth Rocks, The Farmhouse by Kerri's Kreations and at the Yellowknife Airport.
More information will follow on Chris MacNaughton's fundraising campaign, but for now the family will be focusing on Mikaela's surgery and her recovery.