‘Her spine is completely twisted’ – Kilkenny girl with spina bifida and scoliosis forced to travel to UK for surgery

10-year-old Brianna Phelan Somers was born with myelomeningocele spina bifida and scoliosis and as a result is confined to a wheelchair.

Brianna was born on June 6, 2014 in Holles Street Hospital in Dublin. At just one-day-old, Brianna was transferred to Temple Street Children’s Hospital for her first back surgery to close up an opening in her spine.

For the last ten years, Brianna has undergone multiple surgeries, but has “stayed smiling no matter what,” said her mum, Catriona Phelan.

“Despite the challenges, there is always a smile on Brianna’s face and she lightens up any room she enters with her witty, funny sense of humour. I know I’m her mum so I’m biased but I think she is an absolute inspiration. She’s always the one telling us ‘don’t worry, it will all work out’,” laughed Catriona.

Brianna has remained resilient and determined, despite a number of major setbacks. A year and six months ago, in December of 2022, Brianna had spinal surgery to have a growth rod inserted, however the surgery failed.

Brianna’s spine is now “completely twisted” and is affecting her lungs and other vital organs.

“Brianna needed to have a growth rod inserted because she couldn’t breathe, she literally had no neck, her neck was completely gone so she just couldn’t breathe as her lungs were completely under her ribcage,” said Catriona.

“But after she got the growth rod put in, we found out the Brianna was one of the children included in the review by experts from the Boston Children’s Hospital into spinal surgeries at Temple Street.

“However, we didn’t find out that she was part of that review until August of 2023, that was the first we heard from anyone about it, a whole eight months after the surgery.”

As a result, Brianna was transferred to Crumlin under a different consultant who was going to do her back surgery.

“The consultant at Crumlin then told us that another consultant from Great Ormond Street Children’s Hospital in the UK would be travelling over to see Brianna. We were confused because we didn’t understand why another consultant needed to see her. That was when were were told that the rod needed to come out as soon as possible as it was actually causing damage to Brianna and that was why the consultant from the UK needed to see her.”

The consultant explained to us that if they went about the surgery that way, Brianna may never come off the operating table. That was too big a risk to take

The rod that was meant to help Brianna was doing the opposite. It had twisted her spine completely, leaving Brianna with no choice but to get a spinal fusion.

“The consultant in Crumlin told us that Brianna needed a spinal fusion but the catch was that the surgery could not be done in Ireland. For the surgery to be carried out in Ireland, they would have to go through Brianna’s stomach where there are lots of vital organs. The consultant explained to us that if they went about the surgery that way, Brianna may never come off the operating table. That was too big a risk to take.”

As the hospital in the UK has the facilities for the surgery to be done without going through Brianna’s stomach, it was decided she would travel there instead to get the life-changing surgery.

“As the plastic surgeon in the UK is better qualified than the one here in Ireland, they can go through Brianna’s back rather than her stomach to do the spinal fusion. I think because of the review into how spinal surgeries are done in Ireland, they are all being extra careful and not doing anything unless they are certain they can do it,” explained Catriona.

“Although the rod caused damage to Brianna and she never should of got it, I do understand that the consultant was trying to buy Brianna some time,” added Catriona. “I have been told since, by other consultants, that if the consultant that put the rod in hadn’t of done it, I would be standing at Brianna’s gravestone. I understand now he was buying us time.”

If the consultant that put the rod in hadn’t of done it, I would be standing at Brianna’s gravestone

The Government are funding part of Brianna’s treatment in the UK, but the Phelan family still need to provide money for medical support and accommodation themselves which will be costly.

“Any donation, big or small will be welcome,” said Catriona. “We really appreciate all your love and support and prayers over the last ten years so please continue to keep us in your prayers for this next part of Brianna’s journey.

“As Brianna has hit puberty, we only have a 12 month window to get this surgery done so we are hoping her operation will be done over the next few months.”

For Brianna, this surgery will hopefully be life-changing. “Brianna is of course nervous for the surgery but she is also so positive about it. She understands that it will help her sit up straight, give her more independence in life and she won’t have to rely so much on her mammy. She still has to get her feet done as well, but once that’s all done she will be able to transfer herself in and out of her wheelchair and even have a shower by herself without her mam having to help her.

“Brianna knows there is a light at the end of the tunnel,” smiled her mum.

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