At the height of the Covid-19 global health pandemic, my wife, Lana, and I were told that we were having a little baby girl and that she would be born with spina bifida.
I wasn’t there when Lana was told the news due to the government restrictions, I was in the park with my son, Dylan, when I got the call from the sonographer. All I heard was ‘abnormalities on the brain and spine’.
It was planned that our daughter, Jasmine, would be born at Addenbrooke’s Hospital in Cambridge, a two-hour drive from our home in Norwich, so that she could have a major operation at just a few days old. I didn’t think it was too far a drive, but with COVID I was unsure about what would happen and worried that every day she was in hospital I would be driving back and forth to spend time with her and Lana.
Jasmine’s form of spina bifida is known as myelomeningocele, being born with neural tissue exposed on her back which formed into a sac. When she was born, we held our breath as we waited to hear her cry. When she did she was given oxygen and taken to the Neonatal Intensive Care Unit (NICU). Over the next couple of days, I could only see Lana for short periods of time and waited for news about Jasmine. The restrictions made it really hard for us at times. Not only that, but the doctors have to give you the full picture and for Jasmine it was grim. It was so important for us to find a way to be together but even on the day of her surgery, I couldn’t be there. For three hours I had to distract myself around the hospital. The surgery was a success however with the tissue sac removed from the base of Jasmin’s spine being the size of a cricket ball.
When Lana was about to be discharged from hospital, we were told we could stay at The Sick Children’s Trust’s ‘Home from Home’ Chestnut House completely free of charge. It was an incredible lifeline, keeping us close to Jasmine while she was recovering from her operation.
Without Chestnut House, we would have faced expensive hotel bills or exhausting daily commutes from Norwich. All we wanted was to be there with Jasmine, and to find out we could because of a charity meant the world to us.
Since recovering Jasmine has been doing well. Due to the spina bifida she needed her head to be measured regularly to make sure cerebral fluid isn’t leaking into her brain and causing it to swell. We thought she was going to have a shunt inserted, to drain the fluid, but this hasn’t happened.
Four years later, Jasmine is about to start school. Though she has complex needs, including autism, we’re thrilled to have reached this point after everything she’s been through. It is just wonderful.
I’ve never forgotten everything that The Sick Children’s Trust did for us, and take every opportunity to raise funds and awareness for the charity. We just want to give back to a charity that did so much for us.
Jimmy Cross, Jasmine’s dad