Group for people and families hit by major brain injury set up
A mother yesterday said was inspired to start a specialist support group after her 16-year-old son suffered traumatic brain injuries in a car crash.
Helen Cart set up the Bermuda TBI Survivors and Parents/Caregivers Support Group, a private Facebook page, with her partner Michael Souza after David Goonewardene was involved in a car crash earlier this year.
Ms Cart said: “The reason we wanted to put this out there was to get a peer support group going for sufferers and caregivers.
“It can feel very isolating and no one is really talking about it – there are times when it can feel all-consuming.
“I thought this group could also lay the foundation of a formal charity that could work with other groups and organisations in Bermuda to draw attention to TBI, create awareness and eventually generate funds for people who might not have access to resources and finances.”
David, a sports-loving Warwick Academy pupil from Pembroke, was injured after he and three other teenagers were involved in a car crash in March.
The driver lost control and hit a wall on Knapton Hill Road, in Smiths.
David spent about a month in the intensive care unit at the King Edward VII Memorial Hospital before he was airlifted to Boston Children’s Hospital for treatment.
He was later transferred to the city’s Spaulding Rehabilitation Hospital.
Ms Cart said the standard of care in Bermuda was excellent, but David needed more specialised treatment.
She added: “The doctors and nurses here were phenomenal.
“The ICU team and David’s own paediatrician Dr Ryan Bates were all very good at looking after him, but his needs were beyond what Bermuda could do for him.”
Ms Cart said that when David returned home, she was forced to improvise.
She added: “When we came back it was challenging finding resources – it took a lot of work and networking.
“For some who are able to get overseas and have access to that level of expertise and coordinated care it is okay, but there are others who can’t.
“In Boston you leave ICU, then you go to rehab hospital and then to outpatient – it is a step down approach from acute medical, to acute rehab, to functional rehab and then back into the community.”
Ms Cart said: “Everything was very holistic in nature – there was the medical team, then Child Life, a paediatric unit that provided emotional support to David and his siblings – they provided social workers for us to make sure that we were okay.”
She added that Spaulding provided adapted sports so David could continue to exercise.
Ms Cart said: “They have cycling, tennis, kayaking – every sport you can imagine they had adapted it.”
She added David had continued to take part in sports at the WindReach centre for the disabled in Warwick.
Ms Cart said: “He is back to playing table tennis, which he really enjoys.”
She added that families affected by brain injuries had many problems in common and that she hoped the new group would help to reduce feelings of fear and isolation.
Ms Cart said: “You might not know where to find the proper resources or what is available to you. The stress of it can break a person.
“You need guidance how to walk them, guide them or even get in a car – things that you take for granted and do every day.
“There are huge falling risks – secondary brain injury is a serious issue.”
She added: “You need to be able to understand that someone who is dealing with a neuro-trauma has to reform those pathways.
“You need someone who specialises in that, there are some hidden gems in Bermuda, but again people don’t know about them.
“There are some great occupational therapists here and there is a great adaptive coach.
“We continued with our speech therapist in Boston virtually. There are some in Bermuda who we will be reaching out to so we have someone on-island.”
Ms Cart said: “The other challenge is managing the social aspect, managing expectations. They can’t do some of the things they could do before.
“They might not be able to play sports or go to the gym, or at least to the same extent. That can be a huge source of frustration.”
Ms Cart said it was important for people in similar circumstances to know they were not on their own, so she founded the Facebook group.
She added: “There are a lot of people going through this – this group will give you a platform to talk, to support and be supported. Reach out.”
Ms Cart said the group planned to hold Zoom meetings and that an Instagram group would also be set up.
Anyone interested in joining the Facebook group can create an anonymous post or a profile without their name included.
The Facebook group can be found here.
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