Written by Maya’s mum, Priya
During my 20-week routine pregnancy scan, we found out that my firstborn might have a curved spine. It couldn’t be confirmed until after birth, but I was referred to fetal medicine for the rest of my pregnancy. I remember Googling whether it was my fault, and the doctor reassuring me that Maya’s vertebrae not forming correctly would have happened around 6 weeks into the pregnancy. At that point, I had 2 options: stress about it and risk putting the baby under more pressure, or enjoy the rest of my first pregnancy. I chose the latter.
Thankfully, the rest of my pregnancy and Maya’s delivery went really well. She was born on Tuesday, 25th July 2023.
Just 2 days later, on 27th July, Maya was referred for an ultrasound and X-ray. The X-ray confirmed her spine was curved, but the doctors couldn’t interpret the results at that stage. Imagine just giving birth and seeing an X-ray of your newborn’s curved spine—yet having no idea what the condition was or what it meant for her future. We were discharged from the hospital a few days later, still with no answers or clear diagnosis. We soon settled into our new baby bubble and almost forgot about it. Maya was a happy, healthy baby—meeting all her milestones.
On Wednesday, 24th January 2024, we were referred to neurosurgery at the Royal Hospital for Children in Glasgow. The doctor told us that Maya likely had congenital scoliosis, but he wasn’t confident interpreting her results. He specialised in older children with idiopathic scoliosis and admitted he didn’t have much knowledge of congenital cases. I remember thinking, “Well, if you don’t know, who does?” He told us Maya would be referred to the Scottish National Spine Deformity Service in Edinburgh.
Even then, we weren’t overly concerned. Maya was thriving—moving, crawling, hitting every milestone. But we could see that when she was lying down, her body naturally curved. Her shoulders weren’t aligned, part of her rib cage stuck out more than the other, and her spine wasn’t straight. Still, we assumed she might just need a brace in the future.
Then, a week before Maya’s 1st birthday, we were seen at Edinburgh Children’s Hospital and finally learned the full severity of her condition. Maya was diagnosed with congenital thoracic scoliosis. She had two right ipsilateral hemivertebrae at T7 and T9, with associated posterior element abnormalities at those levels. Her X-ray revealed a 60-degree curve in her spine. We were told that if left untreated, the curve would worsen and eventually put pressure on her heart and other organs. Surgery wasn’t about straightening the spine—it was about stopping it from growing any further.
We were shocked. Grateful to finally have a diagnosis—but overwhelmed that our little girl, just about to turn 1, would need major spinal surgery.
Of course, spinal surgery comes with serious risks: paralysis, infection, blood loss, and even death. But doing nothing carried greater dangers. It was a highly complex operation—so rare that only around 10 surgeons in the world are qualified to perform it. The procedure, known as an anterior convex growth arrest, involved removing rib bone from Maya’s rib cage and fusing it to her spine to halt the curve’s growth.
Thanks to the incredible team in Edinburgh, the surgery went as well as it could have. Maya spent time in intensive care and was carefully weaned off medication after experiencing withdrawal symptoms from morphine, clonidine, and chloral.
Recovery was hard. Post-surgery, Maya had to be still for months. She was restricted to her pram or cot all day, every day. It was one of the toughest parts—keeping a toddler, who was eager to move and explore, still. And trying to comfort a child who didn’t understand why she couldn’t move.
Over the past 2 months, Maya has shown us incredible strength and resilience. Her journey is far from over—this is only the beginning. She’s now preparing for her first Boston brace and will likely need more surgeries in the future.
We are so deeply grateful to Edinburgh Children’s Hospital—to the surgeon, anaesthetist, pain relief team, spinal nurses, Crichton Unit, ICU, Dunvegan Ward, physiotherapists, play therapists, orthotics, occupational therapy, radiographers, and tissue viability nurses. From the pre-op appointments to the surgery and aftercare, the number of people involved in just one child’s care is truly humbling.
We were also incredibly lucky to stay at the Ronald McDonald House in the hospital grounds. It became our home away from home during some of the hardest days of our lives.
