Diagnosis and early treatment
During my 20 week scan, doctors suspected that my baby boy, Theo, had spina bifida after spotting a large lump on his back. We were referred from
our local hospital in Worksop to Doncaster, where specialists confirmed he had Myelomeningocele – one of the most severe forms of spina bifida. Hearing this was devastating and set off a rollercoaster of emotions. It’s not news any parent expects to receive.
In the weeks that followed, we attended numerous appointments and scans at specialist hospitals in Doncaster, Sheffield and London to understand the extent of Theo’s condition and what his future might look like. We had to prepare for the possibility that he might never walk, may develop more slowly, and might not have independent bowel or bladder function. That amount of negative preparation was very difficult.
Knowing Theo would likely need surgery shortly after being born, I was induced at Sheffield Children’s Hospital at 37 weeks. After a long 30-hour labour, he picked up an infection and needed to be delivered by emergency caesarean section. With a cyst on his back and his spine and nerves exposed, Theo underwent major surgery at just 16 hours old to close the gap in his back. He was then taken to the neonatal intensive care unit (NICU) to recover.
Two weeks later, a CT scan on his head revealed he also had hydrocephalus, an abnormal buildup of cerebrospinal fluid deep within the brain. Getting that diagnosis early was crucial, and Theo had another surgery, this time to fit a VP shunt to drain the fluid. He underwent further scans and tests on his kidneys and other organs to make sure everything was functioning correctly. He was under the care of four different consultants – and will continue to be until he is 18 years old. As first time parents, seeing our baby so seriously ill was incredibly frightening.
Support from The Sick Children’s Trust
Theo spent three weeks on the NICU recovering. Because we live over an hour away from Sheffield, The Sick Children’s Trust supported my partner, Jak, and me with a place to stay at Magnolia House. Having that ‘Home from Home’ made such a difference to us. Not only did we have a place to stay close to the hospital, we also had somewhere to rest during the long days on the ward. Some days I spent 14 hours by his side, which was exhausting while recovering from a C-section.
Theo needed care every three hours. Knowing the nurses where there meant I could return to Magnolia House for a short rest before going back for his feeds. Without the support of the ‘Home from Home’ we would have spent all our time worrying whenever we had to step away. And staying in a hotel, which we could not afford, would have made the situation impossible. With Magnolia House just a corridor away, a huge weight was lifted from our shoulders.
Theo recovered well from his surgeries and after three weeks we were able to bring him home. Sadly, only a month later he became unwell with an infection. Our local hospital did their best to treat him, but because of his condition he needed to return to Sheffield Children’s Hospital. For the first couple of days I stayed at his bedside, before a room became available at Treetop House, another of The Sick Children’s Trust’s ‘Homes from Home’. Only one parent can stay on the ward overnight, so having a room meant that Jak could be with us too. It made things so much easier; one of us could rest while the other stayed with Theo, ensuring he always had a parent by his side. The charity’s support also meant we avoided the unfeasible daily drive to and from the hospital. Thanks to the support of The Sick Children’s Trust, the whole situation was much more bearable and made sure we could give Theo the best possible care.
Recovery and first Christmas plans
After five days we returned home and Theo has being doing really well since. He’s meeting all his milestones and, to everyone’s surprise, was holding
his head up after just a couple of months. For the last five weeks he’s been in a cast for talipes (clubfoot) and hip dysplasia, which caused his feet to be curved into an unusual position. He’s recently been put into a spica cast from his belly button to his toes to correct the conditions. He’ll be in it for six weeks – including over Christmas, bless him – but he’s overcome so much and is still a very happy little baby.
We’re really looking forward to celebrating his first Christmas. We’ve made plans to see all the family, and have multiple Christmas dinners. He’ll be absolutely spoilt with presents, no doubt! We’ve already taken him to see Santa and Christmas lights, and with so much planned in the lead up to 25th December, it’s going to be very special.
Amid the celebrations, we’ll be taking a moment to think about the families who will be staying in The Sick Children’s Trust’s ‘Homes from Home’ this Christmas while their children are seriously ill in hospital. Anything you can give to help the charity support more families over the festive period will make a real difference.
Laura Bamborough, Theo’s mum.
