FOR FOUR YEARS, Blanche Goring went from doctor to doctor, all of whom seemed clueless about how to handle her daughter’s worsening condition.
Her daughter is now 18, but when she was ten, a curve had started to develop in her back, Goring said.
“I realised there was a curve and I took her to a private doctor and I was told to wait, just allow her to grow,” the mother said. “I did not wait, I was moving from north to south to all the doctors because I knew something was wrong.”
Out of frustration, she got in contact eventually with Boston Children’s Hospital in the United States where the surgery to correct her daughter’s scoliosis (abnormal twisting and curvature of the spine) was done.
Now that her daughter is doing fine, Goring wants to help other parents of children with the condition to navigate a path to medical care.
Last November she founded the Life After Curve Scoliosis Network, a non-profit organisation to raise awareness of the condition and to get sufferers in contact with hospitals overseas. The network provides support to parents, allowing them to share their experiences and encourage each other.
In the space of three months it has attracted over 450 members from across the Caribbean, with the majority from Barbados.
Goring’s daughter finally got the surgery at the age of 14, by which time she was deformed, her back had moved from a 73 degree curve to a 100 degree curve, and her ribs had bunched together, impacting her lungs and heart.
“She could not breathe properly, her organs had shifted and the doctors said she would not have lived past 21 years of age if she did not get the surgery,” the mother said.
“This hurt my heart, this crushed our family,” she said. ‘We did not know about the magnitude of it, but we knew that when the doctors were saying to wait it did not sit well with us.”
When she got in contact with Boston Children’s Hospital, the price tag for the surgery was $200 000, but through the kindness of the hospital and the Sandy Lane Charitable Trust, the operation was done.
“She was in surgery for the whole day and I spent the whole day crying,” Goring said. “They had to build back her ribs, shift back her lungs and heart into the right place.”
The Life After Curve Scoliosis Network is helping parents of children with scoliosis to access health care not available in Barbados.
Four years on, the daughter is doing well.
Goring said she had exhausted her money running from doctor to doctor trying to get a diagnosis and she wants to help other parents avoid the same traumatic journey she experienced.
The Life After Curve Scoliosis Network offers information and contacts to parents of children with scoliosis. Goring said early intervention was key to making a full recovery. “That is why the initiative I have is to tell everybody do not wait,” she said. “I cannot allow another child to go through that; it takes a lot out of you as a parent and out of the child who has low self-esteem because the other children are laughing and they cannot wear normal clothing.”
Goring said the mission of the organisation is to fill the gap she and her family found. She said the surgery was not available in Barbados, but what was even more difficult to deal with was she was not able to get in contact with a hospital overseas through the local health care system.
For that reason, Goring is calling on anyone with experience with scoliosis to join the network and share their stories and experience and, if possible, help put others who need the help in contact with hospitals or doctors.
“We want to make sure that wherever we send children it is a credible institution and we know the standard of care that they will be getting,” she said.
She said those awaiting surgery can use support braces but those are expensive. That is why one of the initiatives of the network is to implement the Scoliosis Management Assistive Programme.
Even though the Boston Children’s Hospital has a brace programme, Goring said it is done for individual patients and the network is working on fundraising ventures to get that project up and running.
A lot of Barbadians were not aware of the condition, she said, even though it is “fairly prevalent” locally.
“So far we have found that people do not know what scoliosis is all about and if you do not know, then you do not know what to look for,” she said. “You may have conditions that are linked to that, that you may only realise when you get older and when you get older you may not be able to get treatment.”
The network is also trying to collect data to determine the actual prevalence.