Ayva’s Spinal Fusion Surgery
Donation protected
Ayva was diagnosed with scoliosis in July 2013 aged 6. A year later she had spinal rods inserted to correct a 84 degree curve in her spine. Since then she’s had 7 surgeries to maintain and lengthen the rods as she has grown.
On 31st August 2020 aged 13 she heard 3 cracks in her back and experienced severe back pain. In the Royal Victoria Hospital for Sick Children’s A&E, the following day, they diagnosed a broken spinal rod (see picture). After much insistence from her dad, and a 7 hour stint in A&E (during which she collapsed from the severity of the pain) she was booked for surgery for spinal fusion, which her surgeon felt was the necessary way to proceed. She spent the night as an inpatient in a ward in RVH Sick Children’s for intravenous pain relief. The surgery was due to take place last Tuesday 15th September, but was cancelled due to a lack of Paediatric Intensive Care Unit beds. We fully understand the reasons for postponement, but are now horrified to be told that her surgery is not classed as emergency, only urgent and the hospital ‘powers that be’ are reluctant to schedule it at all. The only way they will carry out the surgery in the foreseeable future is if the broken rod moves, and protrudes through her skin, or the other rod cannot take the extra strain and also breaks, resulting in an emergency situation!
The spinal rod broke due to wear and tear, and also tension as Ayva was due to be reviewed in March 2020, with a view to more lengthening surgery in June. In short she had grown and the tension of the rods, which were no longer long enough, caused her pain from July 2020. The orthopaedic team on 1st September described the rods as ‘no longer fit for purpose’. We understand the pressure put on the health service by the pandemic and the restrictions it has brought, however this situation is not new with children in Northern Ireland waiting around 47 weeks to see a consultant. The issue was there before Covid but now it is much worse.
In January 2015, 6 months after her first surgery she experienced severe back pain, which eventually after constant badgering of the team at Musgrave Park, was diagnosed that the screws which held her rods in place had become loose. Because of waiting lists then it took until May for corrective surgery to take place. For 5 months at age 7 -8, Ayva was only comfortable lying flat on our living room floor. She missed a significant portion of her education. We refuse to let this happen again.
Ayva attends (or should attend) Sullivan Upper School in Holywood. She is an extremely academic, hardworking and active young person. At the moment she is confined to a profiling bed in our living room, and the only way she can leave the house is in wheelchair. She is struggling to walk, sit up, carry out her own personal care, and move at all. The confinement she is experiencing is in no doubt having a detrimental effect on her long term mental, physical, social and intellectual health and well being. As a family of five this also has a huge knock on effect on Ayva’s two brothers (one of who is sitting the delayed AQE exams in January), and us as parents.
We have contacted the charity Megan’s Wish, who with advice they’ve attained from an external professional source, have reinforced that this surgery needs to be carried out asap. We feel that we have no other option other than to take Ayva to a private spinal clinic to have the surgery performed there. We have an option to have this in a specialist facility in Turkey where other children from Northern Ireland have had the surgery with the help of Megan’s Wish.
On 31st August 2020 aged 13 she heard 3 cracks in her back and experienced severe back pain. In the Royal Victoria Hospital for Sick Children’s A&E, the following day, they diagnosed a broken spinal rod (see picture). After much insistence from her dad, and a 7 hour stint in A&E (during which she collapsed from the severity of the pain) she was booked for surgery for spinal fusion, which her surgeon felt was the necessary way to proceed. She spent the night as an inpatient in a ward in RVH Sick Children’s for intravenous pain relief. The surgery was due to take place last Tuesday 15th September, but was cancelled due to a lack of Paediatric Intensive Care Unit beds. We fully understand the reasons for postponement, but are now horrified to be told that her surgery is not classed as emergency, only urgent and the hospital ‘powers that be’ are reluctant to schedule it at all. The only way they will carry out the surgery in the foreseeable future is if the broken rod moves, and protrudes through her skin, or the other rod cannot take the extra strain and also breaks, resulting in an emergency situation!
The spinal rod broke due to wear and tear, and also tension as Ayva was due to be reviewed in March 2020, with a view to more lengthening surgery in June. In short she had grown and the tension of the rods, which were no longer long enough, caused her pain from July 2020. The orthopaedic team on 1st September described the rods as ‘no longer fit for purpose’. We understand the pressure put on the health service by the pandemic and the restrictions it has brought, however this situation is not new with children in Northern Ireland waiting around 47 weeks to see a consultant. The issue was there before Covid but now it is much worse.
In January 2015, 6 months after her first surgery she experienced severe back pain, which eventually after constant badgering of the team at Musgrave Park, was diagnosed that the screws which held her rods in place had become loose. Because of waiting lists then it took until May for corrective surgery to take place. For 5 months at age 7 -8, Ayva was only comfortable lying flat on our living room floor. She missed a significant portion of her education. We refuse to let this happen again.
Ayva attends (or should attend) Sullivan Upper School in Holywood. She is an extremely academic, hardworking and active young person. At the moment she is confined to a profiling bed in our living room, and the only way she can leave the house is in wheelchair. She is struggling to walk, sit up, carry out her own personal care, and move at all. The confinement she is experiencing is in no doubt having a detrimental effect on her long term mental, physical, social and intellectual health and well being. As a family of five this also has a huge knock on effect on Ayva’s two brothers (one of who is sitting the delayed AQE exams in January), and us as parents.
We have contacted the charity Megan’s Wish, who with advice they’ve attained from an external professional source, have reinforced that this surgery needs to be carried out asap. We feel that we have no other option other than to take Ayva to a private spinal clinic to have the surgery performed there. We have an option to have this in a specialist facility in Turkey where other children from Northern Ireland have had the surgery with the help of Megan’s Wish.
Fundraising team: Ayva’s Fundraising Team (1)
Stuart Hennessey
Organizer
Stuart Hennessey
Team member
