My 20 week scan seemed to go on for ages, there were two people using the scanner and they started pointing at things and swapping places but didn’t actually say anything to me. I sensed something wasn’t right and finally blurted out “I’m scared, what’s going on”. They then told us our baby’s head was “lemon shaped” and the cerebellum was “banana shaped” (yes those were the exact descriptions!) and they needed a second opinion before they could confirm anything but this was usually a sign of Spina bifida. An appointment was made for a further scan the next day at St Georges.
I went home feeling numb. I just curled up in a ball and refused to speak with anyone. I couldn’t quite take in what we had been told but was also hopeful that they could be wrong.
The next day confirmed it but they also told us that it was low on the baby’s spine, which is the best place for it to be. The hospital staff were brilliant and answered all our questions. They even arranged for us to meet with the surgeon who was to carry out the operation to close the hole in the spine after Dominic was born. Finding out more information was actually reassuring. It helped us both to understand what to expect after Dominic was born and we were able to prepare ourselves for what was to come.
I wasn’t allowed to hold Dominic when he was born because of the hole in his spine, he was transferred a few hours later to St Georges ready for his operation the following day. Once again I felt numb. I couldn’t quite allow myself to get attached, just in case he didn’t make it. It was such a relief when he came out of theatre and we were told the operation had gone smoothly and he was doing well.
After we returned home our life seemed to be filled with hospital appointments. Dominic had to be regularly monitored for Hydrocephalus. The break in his spinal cord means that his body was not dispersing spinal fluid the way it should so it was building up in his head. We were finally told that he would have to have another operation to fit a shunt. But he was 5 months old by now, we were both attached to him, how could we possibly risk putting him through another operation? Paul even told me to call the hospital and move the appointment as we had planned to go Christmas shopping that week – anything to put it off!
Neither of us could see at the time that his head was full of fluid. He was our gorgeous baby and looked perfectly normal to us. It’s only when we look back at photos that we can see why the operation was needed.
It was shortly before his shunt operation that I first brought Dominic along to JOG, we only came to a couple of sessions but then I returned to work part time. I remember how disappointed I felt that we couldn’t keep going. We returned to JOG around a year later after I was made redundant and it was so lovely that people had remembered us. The thing I liked most about going to JOG is that when we were there Dominic was “normal”. I never needed to feel uncomfortable about his disability because every parent there understands what it means to cope with a disability. I could do his catheter without snide comments or funny looks, knowing that if someone had a question they would ask me about it and I could do likewise with them.
I am so glad that JOG was there for us and feel very privileged to have met some of the truly amazing people there. There was many a week when a tear would be brought to my eye seeing a child achieve something they had tried for months to do. That is something that I still miss, despite having left 3 months ago, so I’m really looking forward to seeing everyone again at our next coffee morning.
When I look at Dominic now it seems hard to imagine the worry and the trauma we went through. He’s such a happy, cheeky little character and I know that he could never have achieved all that he has without the help and support we received from JOG.