Westover's Jessica Robb to undergo pioneering scoliosis surgery

News Aug 29, 2017 by Mac Christie Flamborough Review

A Westover girl will be just the fourth person in Canada — and the 146th worldwide — to have a revolutionary surgery to correct juvenile idiopathic scoliosis.

Jessica Robb, 14, will undergo ApiFix surgery in October. The surgery will be performed by Dr. Ron El-Hawary, the chief of orthopedics at the IWK Health Centre in Halifax, N.S.

Robb, who was diagnosed with scoliosis at age 7, now has a 50-degree curvature in her spine that is causing her rib cage to twist, restricting her breathing.

She said to be a part of such an exclusive trial surgery is exciting.

“It’s cool,” she said, but admitted she’s a bit nervous for the surgery.

Her mother, Tracy Aikema-Robb, said spinal fusion surgery, long the preferred surgical option for doctors — and the only option offered in Ontario to correct scoliosis — is archaic.

“It’s opening a person from top to bottom down the whole spine, drilling into every vertebrae, putting screws in and putting a rod in each side,” she said. “It’s a 12-hour surgery, major recovery, huge issues with this surgery as far long-term.

“It comes with a lot of complications — people who have it say it’s a high percentage of having complications later on in life with arthritis, consistent pain — it’s horrible.”

Aikema-Robb said Jessica’s condition is rare. Juvenile idiopathic scoliosis means the patient was diagnosed between the ages of 4 and 10.

She noted most scoliosis patients are diagnosed after the age 10, with the condition often being caused by growth.

“Most of them don’t need rods,” she said. “Most of them correct on their own or it’s just a little bit of a curve.”

Aikema-Robb said they noticed Jessica had 25-degree curve at age 7, which created a visible bump in her back.

“Which is significant — it was quite a big bump,” she said. “They were worried because they can’t put rods in while they’re growing.”

To try and combat the curvature, Jessica went through a battery of physiotherapy and wore expensive custom-made braces 24 hours per day.

“It was a lot of brace wearing — those cause pain on their own,” she said. “It’s not a nice journey, but she grew up with them.”

While the family was hoping to avoid surgery — spending thousands of dollars on the braces and physiotherapy — juvenile idiopathic scoliosis is a progressive condition.

“The curve keeps curving,” Aikema-Robb said. “If she doesn’t do surgery, she would die from it — it would affect all her internal organs.

“Her specialist at McMaster told us if she did not have surgery, she would keep curving until her internal organs — she couldn’t function.”

Jessica’s rib cage is now at an angle, preventing her lungs from fully expanding and causing breathing issues.

Jessica said scoliosis has limited her in some ways: she can’t run around much due to her breathing difficulties, and cannot play sports. As well, she gets back pain when she doesn’t wear her brace.

But due to the degree of curvature, bracing no longer has a significant effect on the spine, so Jessica only wears her brace at night.

Still, she’s fortunate compared to some scoliosis sufferers who live in near-constant pain.

While the curve is currently over 50 degrees, the breathing issues began when the curve eclipsed 30 degrees around age 9.

Surgery was determined as the only option for Jessica in late June.

“At that point I went online and started searching like crazy,” said Aikema-Robb, adding she was looking for an alternative to the spinal fusion surgery.

Jessica’s specialist at McMaster only performs the spinal fusion surgery — like many doctors in Ontario.

“There are only two doctors in Canada that perform a different type of surgery.”

Originally, the family investigated a surgery known as vertebral body tethering or vertebral body stapling (VBT), which is what brought them to the East Coast.

The procedure, which is much less invasive and a shorter operation than the spinal fusion, uses growth modulation — restraining one side of the spine to allow growth on the other side — to reverse the abnormal scoliosis growth pattern.

In effect, titanium screws are placed on the outside of the vertebrae causing scoliosis, and a flexible cord is attached to the screws. When the cord is tightened, it compresses the adjacent screws to help straighten the spine.

The family drove to Halifax in early August to have a consultation for the VBT surgery, which is covered by OHIP.

However, while the family was told Jessica qualified for VBT, the hospital suggested she was a perfect candidate to take part in the ApiFix trial.

A minimally invasive surgery, ApiFix incorporates a miniature ratchet mechanism that captures incremental corrections performed by the patient through a physiotherapy regimen.

The apparatus is attached to screws above and below the apex of the curvature, and as the patient performs movements to correct the curvature, such as side bends, the ratchet mechanism expands, holding the spine in a straighter position.

The patient performs the movements with months-long breaks, leading to incremental correction, which allows the soft tissues to accommodate the changes.

“As she works out, it will kind of ratchet her back straight,” Aikema-Robb explained.

With the straightening of her spine, doctors say Jessica’s rib cage will also straighten, taking pressure off her lungs and improving her breathing.

But Aikema-Robb said the surgery procedure won’t completely straighten her spine.

“Best case scenario would be a 10-20-degree curve,” she said. “It will alleviate everything.

“She won’t have a completely straight back, but it will allow her to have a normal life with no issues.”

The surgery only requires a small incision and two screws to affix the small ratchet-based expandable rod, and takes about an hour. The patient is only required to remain in hospital for two to three days after surgery.

ApiFix was invented in Israel and has only been performed since 2011.

Aikema-Robb noted the surgery costs a third of the price of the spinal fusion procedure.

“It should be replacing the fusion surgery,” she said. “There’s no reason why we need to do fusion surgery — it costs over $100,000 US for that surgery.”

However, Aikema-Robb admitted the long-term effects of the nascent surgery aren’t known.

“But out of the 145 that have already been done (over the past six years), they’ve had no complications,” she said of the surgeries. “Every one has been successful.

“The only thing they say is the rod can break — but so can the fusion rods. Worst case scenario, we would go back to fusion.”

In Canada, ApiFix is only offered in Halifax, while VBT is performed in Vancouver and Montreal, Aikema-Robb said.

“He is the only doctor who has been accepted to introduce (ApiFix) in Canada,” she said of El-Hawary. “ I did a lot of research because I didn’t want her to have to deal with rods.”

However, the downside of the ApiFix procedure is that as it is a clinical trial, the family will have to make numerous trips back to Halifax.

The exact date for the surgery isn’t set yet — but it will be in October, Aikema-Robb said.

Overall for the surgery, the family expects to be in Halifax for about a month, as they have to go for a pre-op two weeks prior.

“I’m assuming they’re going to want to see her as it heals,” she said.

One positive, said Aikema-Robb, is that Jessica and her 11-year-old sister Sydney are home-schooled.

She noted support that the family has received from their friends, family, community and churches has been amazing.

“All of our friends from the Rockton Fair, Westfield Heritage Village, Flamborough Baptist Church, Zion URC Church, the Westover and Flamborough communities and beyond have been amazing,” she said. “They have been here through it all, and many people were praying for Jessica that the doctor would find her suitable for VBT surgery.

“The answer to all the prayers far exceeded our expectations, and we are so thankful she is able to have ApiFix. We hope this surgery will soon be available for all Canadians.”

Although the surgery is covered by OHIP, travel to and from Halifax and accommodations aren’t covered.

And while the family hopes to stay at Ronald McDonald House, there’s no guarantee there will be a space.

While the costs of travelling out of province for the surgery will be high, Aikema-Robb said the cost didn’t even register for her and her husband Chris.

“As a parent you don’t even think of that,” she said, adding the family had been willing to try to raise $100,000 for a surgery in Germany. “Luckily, they offered this one in Canada.”

To help cover some of the costs, a family friend has started a GoFundMe page with a goal of $3,500.

To donate or for more information visit the website gofundme.com/8yazj-jessicas-medical-fund.

Westover's Jessica Robb to undergo pioneering scoliosis surgery

14-year-old Robb will be fourth Canadian, 146th globally, to have ApiFix procedure

News Aug 29, 2017 by Mac Christie Flamborough Review

A Westover girl will be just the fourth person in Canada — and the 146th worldwide — to have a revolutionary surgery to correct juvenile idiopathic scoliosis.

Jessica Robb, 14, will undergo ApiFix surgery in October. The surgery will be performed by Dr. Ron El-Hawary, the chief of orthopedics at the IWK Health Centre in Halifax, N.S.

Robb, who was diagnosed with scoliosis at age 7, now has a 50-degree curvature in her spine that is causing her rib cage to twist, restricting her breathing.

She said to be a part of such an exclusive trial surgery is exciting.

“It’s cool,” she said, but admitted she’s a bit nervous for the surgery.

Her mother, Tracy Aikema-Robb, said spinal fusion surgery, long the preferred surgical option for doctors — and the only option offered in Ontario to correct scoliosis — is archaic.

“It’s opening a person from top to bottom down the whole spine, drilling into every vertebrae, putting screws in and putting a rod in each side,” she said. “It’s a 12-hour surgery, major recovery, huge issues with this surgery as far long-term.

“It comes with a lot of complications — people who have it say it’s a high percentage of having complications later on in life with arthritis, consistent pain — it’s horrible.”

Aikema-Robb said Jessica’s condition is rare. Juvenile idiopathic scoliosis means the patient was diagnosed between the ages of 4 and 10.

She noted most scoliosis patients are diagnosed after the age 10, with the condition often being caused by growth.

“Most of them don’t need rods,” she said. “Most of them correct on their own or it’s just a little bit of a curve.”

Aikema-Robb said they noticed Jessica had 25-degree curve at age 7, which created a visible bump in her back.

“Which is significant — it was quite a big bump,” she said. “They were worried because they can’t put rods in while they’re growing.”

To try and combat the curvature, Jessica went through a battery of physiotherapy and wore expensive custom-made braces 24 hours per day.

“It was a lot of brace wearing — those cause pain on their own,” she said. “It’s not a nice journey, but she grew up with them.”

While the family was hoping to avoid surgery — spending thousands of dollars on the braces and physiotherapy — juvenile idiopathic scoliosis is a progressive condition.

“The curve keeps curving,” Aikema-Robb said. “If she doesn’t do surgery, she would die from it — it would affect all her internal organs.

“Her specialist at McMaster told us if she did not have surgery, she would keep curving until her internal organs — she couldn’t function.”

Jessica’s rib cage is now at an angle, preventing her lungs from fully expanding and causing breathing issues.

Jessica said scoliosis has limited her in some ways: she can’t run around much due to her breathing difficulties, and cannot play sports. As well, she gets back pain when she doesn’t wear her brace.

But due to the degree of curvature, bracing no longer has a significant effect on the spine, so Jessica only wears her brace at night.

Still, she’s fortunate compared to some scoliosis sufferers who live in near-constant pain.

While the curve is currently over 50 degrees, the breathing issues began when the curve eclipsed 30 degrees around age 9.

Surgery was determined as the only option for Jessica in late June.

“At that point I went online and started searching like crazy,” said Aikema-Robb, adding she was looking for an alternative to the spinal fusion surgery.

Jessica’s specialist at McMaster only performs the spinal fusion surgery — like many doctors in Ontario.

“There are only two doctors in Canada that perform a different type of surgery.”

Originally, the family investigated a surgery known as vertebral body tethering or vertebral body stapling (VBT), which is what brought them to the East Coast.

The procedure, which is much less invasive and a shorter operation than the spinal fusion, uses growth modulation — restraining one side of the spine to allow growth on the other side — to reverse the abnormal scoliosis growth pattern.

In effect, titanium screws are placed on the outside of the vertebrae causing scoliosis, and a flexible cord is attached to the screws. When the cord is tightened, it compresses the adjacent screws to help straighten the spine.

The family drove to Halifax in early August to have a consultation for the VBT surgery, which is covered by OHIP.

However, while the family was told Jessica qualified for VBT, the hospital suggested she was a perfect candidate to take part in the ApiFix trial.

A minimally invasive surgery, ApiFix incorporates a miniature ratchet mechanism that captures incremental corrections performed by the patient through a physiotherapy regimen.

The apparatus is attached to screws above and below the apex of the curvature, and as the patient performs movements to correct the curvature, such as side bends, the ratchet mechanism expands, holding the spine in a straighter position.

The patient performs the movements with months-long breaks, leading to incremental correction, which allows the soft tissues to accommodate the changes.

“As she works out, it will kind of ratchet her back straight,” Aikema-Robb explained.

With the straightening of her spine, doctors say Jessica’s rib cage will also straighten, taking pressure off her lungs and improving her breathing.

But Aikema-Robb said the surgery procedure won’t completely straighten her spine.

“Best case scenario would be a 10-20-degree curve,” she said. “It will alleviate everything.

“She won’t have a completely straight back, but it will allow her to have a normal life with no issues.”

The surgery only requires a small incision and two screws to affix the small ratchet-based expandable rod, and takes about an hour. The patient is only required to remain in hospital for two to three days after surgery.

ApiFix was invented in Israel and has only been performed since 2011.

Aikema-Robb noted the surgery costs a third of the price of the spinal fusion procedure.

“It should be replacing the fusion surgery,” she said. “There’s no reason why we need to do fusion surgery — it costs over $100,000 US for that surgery.”

However, Aikema-Robb admitted the long-term effects of the nascent surgery aren’t known.

“But out of the 145 that have already been done (over the past six years), they’ve had no complications,” she said of the surgeries. “Every one has been successful.

“The only thing they say is the rod can break — but so can the fusion rods. Worst case scenario, we would go back to fusion.”

In Canada, ApiFix is only offered in Halifax, while VBT is performed in Vancouver and Montreal, Aikema-Robb said.

“He is the only doctor who has been accepted to introduce (ApiFix) in Canada,” she said of El-Hawary. “ I did a lot of research because I didn’t want her to have to deal with rods.”

However, the downside of the ApiFix procedure is that as it is a clinical trial, the family will have to make numerous trips back to Halifax.

The exact date for the surgery isn’t set yet — but it will be in October, Aikema-Robb said.

Overall for the surgery, the family expects to be in Halifax for about a month, as they have to go for a pre-op two weeks prior.

“I’m assuming they’re going to want to see her as it heals,” she said.

One positive, said Aikema-Robb, is that Jessica and her 11-year-old sister Sydney are home-schooled.

She noted support that the family has received from their friends, family, community and churches has been amazing.

“All of our friends from the Rockton Fair, Westfield Heritage Village, Flamborough Baptist Church, Zion URC Church, the Westover and Flamborough communities and beyond have been amazing,” she said. “They have been here through it all, and many people were praying for Jessica that the doctor would find her suitable for VBT surgery.

“The answer to all the prayers far exceeded our expectations, and we are so thankful she is able to have ApiFix. We hope this surgery will soon be available for all Canadians.”

Although the surgery is covered by OHIP, travel to and from Halifax and accommodations aren’t covered.

And while the family hopes to stay at Ronald McDonald House, there’s no guarantee there will be a space.

While the costs of travelling out of province for the surgery will be high, Aikema-Robb said the cost didn’t even register for her and her husband Chris.

“As a parent you don’t even think of that,” she said, adding the family had been willing to try to raise $100,000 for a surgery in Germany. “Luckily, they offered this one in Canada.”

To help cover some of the costs, a family friend has started a GoFundMe page with a goal of $3,500.

To donate or for more information visit the website gofundme.com/8yazj-jessicas-medical-fund.

Westover's Jessica Robb to undergo pioneering scoliosis surgery

14-year-old Robb will be fourth Canadian, 146th globally, to have ApiFix procedure

News Aug 29, 2017 by Mac Christie Flamborough Review

A Westover girl will be just the fourth person in Canada — and the 146th worldwide — to have a revolutionary surgery to correct juvenile idiopathic scoliosis.

Jessica Robb, 14, will undergo ApiFix surgery in October. The surgery will be performed by Dr. Ron El-Hawary, the chief of orthopedics at the IWK Health Centre in Halifax, N.S.

Robb, who was diagnosed with scoliosis at age 7, now has a 50-degree curvature in her spine that is causing her rib cage to twist, restricting her breathing.

She said to be a part of such an exclusive trial surgery is exciting.

“It’s cool,” she said, but admitted she’s a bit nervous for the surgery.

Her mother, Tracy Aikema-Robb, said spinal fusion surgery, long the preferred surgical option for doctors — and the only option offered in Ontario to correct scoliosis — is archaic.

“It’s opening a person from top to bottom down the whole spine, drilling into every vertebrae, putting screws in and putting a rod in each side,” she said. “It’s a 12-hour surgery, major recovery, huge issues with this surgery as far long-term.

“It comes with a lot of complications — people who have it say it’s a high percentage of having complications later on in life with arthritis, consistent pain — it’s horrible.”

Aikema-Robb said Jessica’s condition is rare. Juvenile idiopathic scoliosis means the patient was diagnosed between the ages of 4 and 10.

She noted most scoliosis patients are diagnosed after the age 10, with the condition often being caused by growth.

“Most of them don’t need rods,” she said. “Most of them correct on their own or it’s just a little bit of a curve.”

Aikema-Robb said they noticed Jessica had 25-degree curve at age 7, which created a visible bump in her back.

“Which is significant — it was quite a big bump,” she said. “They were worried because they can’t put rods in while they’re growing.”

To try and combat the curvature, Jessica went through a battery of physiotherapy and wore expensive custom-made braces 24 hours per day.

“It was a lot of brace wearing — those cause pain on their own,” she said. “It’s not a nice journey, but she grew up with them.”

While the family was hoping to avoid surgery — spending thousands of dollars on the braces and physiotherapy — juvenile idiopathic scoliosis is a progressive condition.

“The curve keeps curving,” Aikema-Robb said. “If she doesn’t do surgery, she would die from it — it would affect all her internal organs.

“Her specialist at McMaster told us if she did not have surgery, she would keep curving until her internal organs — she couldn’t function.”

Jessica’s rib cage is now at an angle, preventing her lungs from fully expanding and causing breathing issues.

Jessica said scoliosis has limited her in some ways: she can’t run around much due to her breathing difficulties, and cannot play sports. As well, she gets back pain when she doesn’t wear her brace.

But due to the degree of curvature, bracing no longer has a significant effect on the spine, so Jessica only wears her brace at night.

Still, she’s fortunate compared to some scoliosis sufferers who live in near-constant pain.

While the curve is currently over 50 degrees, the breathing issues began when the curve eclipsed 30 degrees around age 9.

Surgery was determined as the only option for Jessica in late June.

“At that point I went online and started searching like crazy,” said Aikema-Robb, adding she was looking for an alternative to the spinal fusion surgery.

Jessica’s specialist at McMaster only performs the spinal fusion surgery — like many doctors in Ontario.

“There are only two doctors in Canada that perform a different type of surgery.”

Originally, the family investigated a surgery known as vertebral body tethering or vertebral body stapling (VBT), which is what brought them to the East Coast.

The procedure, which is much less invasive and a shorter operation than the spinal fusion, uses growth modulation — restraining one side of the spine to allow growth on the other side — to reverse the abnormal scoliosis growth pattern.

In effect, titanium screws are placed on the outside of the vertebrae causing scoliosis, and a flexible cord is attached to the screws. When the cord is tightened, it compresses the adjacent screws to help straighten the spine.

The family drove to Halifax in early August to have a consultation for the VBT surgery, which is covered by OHIP.

However, while the family was told Jessica qualified for VBT, the hospital suggested she was a perfect candidate to take part in the ApiFix trial.

A minimally invasive surgery, ApiFix incorporates a miniature ratchet mechanism that captures incremental corrections performed by the patient through a physiotherapy regimen.

The apparatus is attached to screws above and below the apex of the curvature, and as the patient performs movements to correct the curvature, such as side bends, the ratchet mechanism expands, holding the spine in a straighter position.

The patient performs the movements with months-long breaks, leading to incremental correction, which allows the soft tissues to accommodate the changes.

“As she works out, it will kind of ratchet her back straight,” Aikema-Robb explained.

With the straightening of her spine, doctors say Jessica’s rib cage will also straighten, taking pressure off her lungs and improving her breathing.

But Aikema-Robb said the surgery procedure won’t completely straighten her spine.

“Best case scenario would be a 10-20-degree curve,” she said. “It will alleviate everything.

“She won’t have a completely straight back, but it will allow her to have a normal life with no issues.”

The surgery only requires a small incision and two screws to affix the small ratchet-based expandable rod, and takes about an hour. The patient is only required to remain in hospital for two to three days after surgery.

ApiFix was invented in Israel and has only been performed since 2011.

Aikema-Robb noted the surgery costs a third of the price of the spinal fusion procedure.

“It should be replacing the fusion surgery,” she said. “There’s no reason why we need to do fusion surgery — it costs over $100,000 US for that surgery.”

However, Aikema-Robb admitted the long-term effects of the nascent surgery aren’t known.

“But out of the 145 that have already been done (over the past six years), they’ve had no complications,” she said of the surgeries. “Every one has been successful.

“The only thing they say is the rod can break — but so can the fusion rods. Worst case scenario, we would go back to fusion.”

In Canada, ApiFix is only offered in Halifax, while VBT is performed in Vancouver and Montreal, Aikema-Robb said.

“He is the only doctor who has been accepted to introduce (ApiFix) in Canada,” she said of El-Hawary. “ I did a lot of research because I didn’t want her to have to deal with rods.”

However, the downside of the ApiFix procedure is that as it is a clinical trial, the family will have to make numerous trips back to Halifax.

The exact date for the surgery isn’t set yet — but it will be in October, Aikema-Robb said.

Overall for the surgery, the family expects to be in Halifax for about a month, as they have to go for a pre-op two weeks prior.

“I’m assuming they’re going to want to see her as it heals,” she said.

One positive, said Aikema-Robb, is that Jessica and her 11-year-old sister Sydney are home-schooled.

She noted support that the family has received from their friends, family, community and churches has been amazing.

“All of our friends from the Rockton Fair, Westfield Heritage Village, Flamborough Baptist Church, Zion URC Church, the Westover and Flamborough communities and beyond have been amazing,” she said. “They have been here through it all, and many people were praying for Jessica that the doctor would find her suitable for VBT surgery.

“The answer to all the prayers far exceeded our expectations, and we are so thankful she is able to have ApiFix. We hope this surgery will soon be available for all Canadians.”

Although the surgery is covered by OHIP, travel to and from Halifax and accommodations aren’t covered.

And while the family hopes to stay at Ronald McDonald House, there’s no guarantee there will be a space.

While the costs of travelling out of province for the surgery will be high, Aikema-Robb said the cost didn’t even register for her and her husband Chris.

“As a parent you don’t even think of that,” she said, adding the family had been willing to try to raise $100,000 for a surgery in Germany. “Luckily, they offered this one in Canada.”

To help cover some of the costs, a family friend has started a GoFundMe page with a goal of $3,500.

To donate or for more information visit the website gofundme.com/8yazj-jessicas-medical-fund.