Parents promote partial OHIP funded life changing cerebral palsy U.S. surgery – insideTORONTO.com

When Keisha Young-Haeckers son, Thomas, entered the world as a micro-preemie at one pound, 14 ounces, gripping fear eclipsed the joy.

Infection during her pregnancy induced labour at just 23 weeks. Thomas spent three-and-a-half months in a NICU incubator at Mount Sinai Hospital.

Doctors forecasted a dark fate for the newborn.

Doctors said he would have severe cerebral palsy, Young-Haecker recalled. They said he would be blind, couldnt speak, and would be severely handicapped. The doctor said Its cute going up and down the stairs when you have a little baby. But can you imagine having a 50-pound baby boy, who cant do anything for himself, and you have to lift him up and down the stairs all the time?

And that was his way of telling us, maybe now is a good time to let him go. I wanted to prove him wrong. I was angry. How dare you tell me this is what is going to happen.

The couple didnt let go of their son.

Thomas began intensive interventions when he arrived home at 10 months old, including osteopathy and physiotherapy that cost his parents $250 a week, and later, speech therapy and occupational therapy.

Thomas wears leg splits and uses a wheelchair for distance.

Thomas is by no means severe, Young-Haecker said. He still has his issues. As he gets older, the issues will get worse. He has tightness in his legs that causes him to be crouched, and he usually walks high on his toes.

That doesnt stop the little boy, who sits transfixed by his Mario Chase video game.

Cerebral palsy is the most-frequent cause of physical disability in Canadian children, affecting two to 2.5 in 1,000 children every year, the Bloorview Research Institute reported.

About a year ago, his legs were so tight they were like pulling rubber bands. His legs were shaking in bed. He said It hurts, Young-Haecker said of lessening effective Botox treatments.

A nurse, Young-Haecker began online research of a surgical procedure called Selective Dorsal Rhizotomy or SDR.

American neurosurgeon Dr. T.S. Park pioneered SDR at St. Louis Childrens Hospital where it has been performed on more than 3,000 patients.

In SDR, surgeons identify and electrically stimulate the dorsal spinal rootlet nerve fibres that cause spasticity in their transmission from the muscle to the spinal cord. Surgeons selectively cut the abnormal rootlets, leaving the normal rootlets intact.

Young-Haecker approached Dr. Darcy Fehlings, who follows Thomas at Holland Bloorview Kids Rehabilitation Hospitals spasticity clinic.

Fehlings discussed Thomas case with Dr. James Drake, the head of neurosurgery at SickKids Hospital. Drake is one of two pediatric neurosurgeons in Ontario qualified to assess patients seeking out-of-country (OOC) SDR surgery.

Thomas future changed.

Last December, Young-Haecker opened a letter from the ministry approving Thomas OOC OHIP funding the same day her husband Corey read a letter from Park confirming Thomas for SDR surgery on May 11.

I called Corey. Thomas was approved for surgery. He said, How do you know? We were so super happy. We were excited to know Thomas life would be pain-free.

Four-year-old Thomas is an excellent candidate for SDR surgery, Park said.

Thomas will be able to walk independently with improved balance and endurance, Park wrote in the letter. He will be able to participate in recreational activities and SDR will prevent future deterioration.

Post-SDR surgery, Thomas spasticity will be permanently reduced, and his sitting and standing postures and comfort improved, Park said.

Still, the Haeckers needed to raise $25,000 for possible post-SDR tendon-release surgery and equipment.

They took out a line-of-credit. Their GoFundMe Page (https://www.gofundme.com/thomasjourney) has surpassed $30,000.

And they committed to Park to a year of daily physiotherapy post-SDR.

But Young-Haecker is concerned about how and who is evaluated for OOC OHIP coverage.

Ours was not as tough as struggle as that of some parents seeking out-of-country SDR. There shouldnt be that discrepancy, she said. Some parents cant even get to see these two (evaluating) doctors because theyre told theyre out of the catchment area.

The Ministry of Health is not aware of any catchment area barriers that would exclude patients from obtaining services at either location (doctor), ministry spokesperson David Jensen said in an email.

The ministry has received 17 OOC prior-approval applications for patients seeking SDR in the U.S. since it began accepting applications October 2014; 11 of those were approved for OOC OHIP funding, Jensen said.

The ministry is reviewing a proposal from the Toronto Local Health Integration Network and Holland Bloorview and SickKids Hospital to establish a joint SDR assessment/surgery/rehab program in Ontario, he added.

If approved, Young-Haecker urged the government to offer parents physio cost relief.

Even if Ontario does come up with a SDR program here, they need to come up with a structure for physio after surgery where parents dont have to pay so much for physio for an entire year after, she said.

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Parents promote partial OHIP funded life changing cerebral palsy U.S. surgery - insideTORONTO.com