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27 Nov 2021

Shinrone girl with deteriorating spina bifida condition waiting two years for essential operation

Shinrone girl with deteriorating spina bifida condition waiting two years for essential operation

A six year old girl from Shinrone has been waiting two years for an essential operation.

Rosie Mortensen suffers from Spina Bifida and Hydrocephalus, which is a deteriorating condition. Her parents Jessie and Gareth say her condition has deteriorated “massively” during the last two years and she is confined to a wheelchair.

Jessie told the Midland Tribune that she and Rosie first met with a paediatric orthopaedic surgeon in early 2019. “We met again with him in September 2019 and he told us that he hoped to carry out the surgery on Rosie in December 2019; but nothing came of that. Since then we have been waiting for ever and Rosie's condition has been getting worse. She received a date for the 4th of October last but this was cancelled and we never received a new date.”

Jessie said she and Gareth have come together with other parents to form a group of parents of children with Spina Bifida and Hydrocephalus. The group has written a letter to the Minister for Health asking him “to make some changes for our children.” The group has the names and details of 82 children who are waiting for orthopaedic operations. The group has also been heavily publicising its cause in local and national media.

The Consultant Paediatric Orthopaedic Surgeon Connor Green, who is Rosie's surgeon, has spoken about what the government could do to ensure timely access to care. “He said the process could be sped up by transferring children for elective surgery to Cappagh Hospital in Dublin.

“We were very disappointed when Rosie's surgery, scheduled for Temple St Dublin was cancelled. The reasons we were given was bed shortages because of the RSV virus and staff shortages because of Covid.

“Rosie's condition was of a minor nature when it began just under three years ago, but it is serious now. Both her hips have come out of place. Because of Scoliosis her spine is curved.”

Rosie was born with Spina bifida and is a full time wheelchair user. In early 2019 her mother noticed some tightness in Rosie's legs following on from multiple fractures of her femurs.

In September 2019 a consultant told them she needed to have some tendon releases done on both legs which is a very straightforward and minor procedure.

This procedure never happened and Jessie spent the majority of 2020 lodging multiple complaints with risk management in the hospital because of the waiting time for surgery.

“We finally were called to the clinic in December 2020 where we met with the surgeon and his team, Rosie was x-rayed and it was discovered that one of her hips had become dislocated, and that she now had scoliosis with a 30° curve on her spine. They still had no date to offer us for surgery so again I lodged a complaint with risk management and eventually in March of this year I lodged a complaint with the ombudsman for children. I requested an appointment with Connor Green as I had become increasingly concerned by her deterioration.”

In September they got to see Mr Green and Rosie was again x-rayed and that revealed that both hips had become dislocated. Mr Green decided Rosie now needed a far more invasive surgery than originally planned and booked her in for the 4th of October.

“I spent the following few weeks psyching Rosie up for having this surgery," Jessie told the Tribune, "because as you can imagine she is very used to being in a hospital and aware of what she is facing which is very frightening for her.

“4 days before the surgery was due to take place it was cancelled, with no future date given and the reason for the cancellation being that there was a shortage of beds and all elective surgeries were being cancelled. I have phoned several times a week since that and electives have been cancelled every day since which is 7 weeks in a row. You can imagine the difficulties that we then faced having to explain to her that her surgery wasn't going ahead. It was extremely upsetting for both Rosie, ourselves and our families.

“The night I got the phone call to say the surgery was cancelled I put a post on a Facebook group for parents of children born with SB and or Hydrocephalus.

“There were over 130 comments on that post many of which were other families in the same situation. So this is where the paediatric advocacy group stepped in. They began speaking to all of the families affected and set up some zoom meetings. They now have the names and details of 82 children with Spina bifida and or Hydrocephalus alone who are waiting on urgent orthopaedic intervention.”

They wrote a letter to the minister and are calling for an ironclad, rapid and achievable solution for the children. “Many of these children, Rosie included,” commented Jessie, “are too complex and cannot travel abroad for treatment. They cannot wait for the new children's hospital to be built as they will deteriorate much quicker than children without their condition and they need a solution now.

“Rosie's surgeon Connor Green and Professor McCormack stood before an Oireachtas health committee on the 11th of November and Mr Green told them that these waiting list numbers have always been there since before Covid and before the cyber attacks. He later said in an interview that the solution to this problem was quiter simple - they have found space in Cappagh hospital which will only be used for elective procedures. The problem with Temple Street is that they are both acute and elective so if an orthopaedic emergency comes in when an elective procedure is planned the acute case will obviously take priority. That wouldn't happen in Cappagh and Mr Green reckons that will increase the amount of paediatric surgeries by 400% and has costed it at about 5.1 million, which is, in the grand scheme of things, a drop in the ocean! All they need is the green light to go ahead and get this up and running.

“We are asking people to offer their support by going to their local politicians and requesting that the government provide the necessary finances to help our children like Rosie.

“This is only the beginning of our campaign and as a group of parents we will stop at nothing until our children get what they deserve.”

On RTE's Today with Claire Byrne, co-founder of the Scoliosis Advocacy Network Claire Cahill said there has been no engagement with Minister for Health Stephen Donnelly, despite repeated requests. Ms Cahill said children are “going to school in pain”, and called on the country's leaders to take action on the issue. “These children are also living with emotional distress while the experience also puts huge pressure on a family.”

Taoiseach Micheál Martin said the delays are not because of a lack of resources but are due to a “systemic failure”.

 
 
 
 
 

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