Our baby’s spina bifida diagnosis – Carlynne’s story (part one)

After finishing my night shift, I went along to my 20 week scan. My husband and I were so excited to see our baby. We felt a bit nervous because we’d previously had a miscarriage but I felt the baby kicking away as we sat in the waiting room so I was feeling positive.

The sonographer showed us the images of our baby as she conducted the scan. She started going over the same part of the baby’s brain again and again because she couldn’t find the cerebellum – the part of the brain that receives information from the spinal cord.

I was told to go on a walk and come back because it was most likely to be related to the baby’s position. After I returned, the sonographer still couldn’t find what she was looking for so booked us in for an appointment the following day with the consultant.

I knew then and there that something was wrong and I was already inconsolable.

The next day, the consultant conducted another scan. When he finished he said to us, “You don’t see me for good news.” We were then told that our baby had spina bifida and hydrocephalus – fluid on the brain.

For readers who don’t know, spina bifida literally means “gap in the spine” in Latin. It happens when the spinal cord does not completely form. The spinal cord does not close leaving a gap exposing nerves and tissue from the spinal cord which gets damaged as baby grows in the womb. A lesion forms on the site where the gap is.

I was in shock. The way the news was delivered was not good to say the least. We were immediately told that our baby may have little to no quality of life. She would be paralysed with no bowel or bladder control, learning difficulties and a whole list of other complications. All our midwife appointments were cancelled then and there. As a nurse myself, I am aware that you need to give patients the worst case scenario but I soon learnt I wasn’t given all the information to make an informed decision.

My husband and I were left alone to gather our thoughts. I started sobbing and said that I didn’t think I could terminate the pregnancy.

After we were told about the diagnosis I didn’t feel pregnant anymore. I don’t know why but I also felt like I had to hide the bump from my husband. I became anxious that he would leave me if we both didn’t want to same thing. Fortunately, we both knew we wanted this baby and would carry on no matter what. Every kick made us believe that we were making the right decision and we were more positive than ever.

We were referred to the Foetal Medicine Unit in Glasgow which was excellent. A more in-depth scan was done and the doctors sat down with us to discuss everything. We were told that the lesion wasn’t as big as first made out and that the fluid on the brain was not over the average limit.

They were upfront and told us that no one can really say how this would affect our baby until she was born but that people with spina bifida are known for defying expectations. They went on to tell us about what would happen once she was born and this all helped us make the decision to carry on with the pregnancy.

It was the hardest time of our life but it made us a lot stronger as a couple. We were able to support each other and had amazing support from friends and family. We took some time off work to get our heads round everything which was what we needed.

I could tell that it was awkward sometimes when we told friends and they wouldn’t know what to say. I was open and always preferred if people asked questions rather than give me a sad look.

The hospital in Glasgow were amazing at preparing us for what was ahead. We met with the neurosurgeon that would be doing our baby’s surgeries. We were told that once she was born they would close the lesion on her spine in the first few days and then monitor her to see if she needed a shunt for the fluid in her brain. We had regular appointments at Foetal Medicine every couple of weeks which was reassuring and let us see how the baby was coming on.

If you have just found out that your child has spina bifida, my advice would be speak to people who have been in the same position. Don’t just listen to facts and figures. Look at the real life people living with it and see how they are doing. This diagnosis doesn’t need to be the end of the world, in fact, it’s just the beginning.

Read part two of Carolynne's story

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