This morning we had the oppertunity to have an interview with two analysts from Health Quality Ontario. They have been reaching out to communities to speak with families about their experiences raising a child with cerebral palsy in Ontario. They are working on a project to get families perspectives on care, therapies and surgeries available in the province. Specifically they are interested in SDR Surgery.
Of all the surgical procedures currently performed on patients with cerebral palsy (CP), selective dorsal rhizotomy (SDR) has undergone more thorough scientific scrutiny than any other (including orthopedic surgery). SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. SDR is the only surgical procedure that can provide permanent reduction of spasticity in CP.
The surgery is currently not available in Ontario. If families choose this type of surgery for their child with CP their only options right now are to seek referrals to British Columbia, Montreal or to the States- St. Louis with a hefty price tag of $100,000.00. They were interested in hearing about the daily decisions involved with having a child with CP such as therapies, financial struggles, help needed from family and friends and short term/ long term goals for the family. It was difficult speaking about the hard days but it was important for them to hear. They wanted to know about the costs involved with private therapies, experiences with doctors and the transparency of information of what is available within health care and support in making decisions around future surgeries. They hope to have their project completed by June. They will write a report based on many families perspectives and then present their report to the ministry of health who will make the decision about the future of therapy and SDR surgery for children with cerebral palsy in the province of Ontario. It was encouraging to learn that such projects exist to inform financial decisions/budgets within health care, and ultimately it was encouraging that no matter what the outcome is- the Province is hearing that these options of surgery are important to families to explore within their own province. Madison’s diagnosis of spastic diaplegic cerebral palsy is considered to be a favorable candidate for this type of surgery. She is still young, but we know we will have to start having more conversations around alternative therapies and possible surgeries as she gets older and we see what her needs are.
If you are a parent of a child with cerebral palsy and would like to speak with Health Quality Ontario to share your experiences, send us a message and we will pass on the contact information. They are also very interested in speaking with parents who have a child who has already undergone SDR surgery.
And now….Madison’s day…
Madison had a great morning at school. She played with her two buddies Alma and Emma in the gym pushing each other around on a scooter and had lots of giggles. She also had a great afternoon with Pam and Medford . She liked using the phone to call Mama, loved Pam’s blueberries and showing them her tricks! After dinner she had her swim lesson with Ryan. She is tall enough now to touch the bottom of the pool in the hot pool at Variety Village! Ryan tried independent standing with her where he stood her up and let go and they did some walking through the water. He also had her on her tummy on the ramp to practice blowing bubbles with her new goggles. Great lesson!