My pregnancy was as plain sailing as they come, zero morning sickness, no cravings, minimal weight gain (which is just as well because I’m no size zero!). Me and Adam sat in the waiting area before my 20 week scan discussing how the ‘nervous’ one should be the twelve weeker, not this one…. Talk about eating your words.
I lay still, my bump exposed and cold where the air con was blowing against the ultrasound gel. The scan took ages as the sonographer sat silent recording her findings. ‘All normal’ I thought, there’s a lot to look at and we have had the confirmation of a heartbeat so all’s good. And then I hear the
words ‘problem’, ‘spine’, ‘too much fluid on brain’.
Have you ever had that feeling when you feel your insides are going to fall out of your arse? You feel hot, dull and hollow?
I had a second scan that afternoon with a Consultant at The Fetal Medicine Unit. ‘I have seen enough’ he said. On the short walk to the small room off the main waiting area I tried to think of positive conclusions to what those words may have meant- maybe the calculation of fluid on the brain was different, it was fine and in fact we are dealing with a less dramatic, fixable club foot?
‘It’s spina bifida; severe spina bifida’. Those words still get me now. His feet were turned in because his spinal column hadn’t fully closed, allowing the spinal cord to grow out, so no signal was getting past his waist. The extra fluid was caused by the spinal cord growing out of the spinal column, his
brain was being pulled down and squashed, which meant part of his brain was barley formed.
I fell into survival mode, something I became all too familiar with in the coming years. I had a pad with a list of questions and frantically scribbled illegible, important bits of information that I felt I needed to remember. We had two options, continue with the pregnancy or have a compassionate
Previous to this, Adam and I had always said if the 12 week tests, for Downs, Edwards or Patau’s Syndrome came back problematic we would terminate the pregnancy, much to my Mums disapproval. She wasn’t shy in letting me know she didn’t agree with this, and Adams Dad is quite religious so I was conscious of what his views would be. Our parents met us back at our house and I wasn’t shy in broadcasting that I didn’t want to hear anyone’s opinion on the matter. Looking back, our views on termination feels like such an arrogant mind set. At the time we had the luxury of living in our pink and fluffy world, not having to give any serious thought into such decisions. We thought that a good quality of life was what we had growing up, and if a child had any of these syndromes they wouldn’t be able to have that. Now that we were staring this decision in the face, it wasn’t that easy. Could we just switch off all of these feelings we have for this baby, that we have recently started to feel move? Could we play God and decided if this baby should live or die?
In the coming days I spoke to someone from the charity Shine, who provides specialist advice and support for spina bifida and hydrocephalus, and we met with a Neuro Consultant at our local children’s hospital who specialises in spina bifida and the associated surgery. The two perspective were very different, which I liked. I was surprised at their honesty, but we needed to know the good and the bad. Despite my request for not hearing anyone’s opinions, a few days later my mum just couldn’t help herself, she obviously needed to get it off her chest and I am so glad she did. She acknowledged her views about aborting certain pregnancies, but she told me she thought this situation was different, given the information we had. She reassured me that she would understand and support us with whatever our decision would be.
To us, whichever way we went it was tough- our baby lost and we lost. We wanted to make a decision based on what we thought would cause the least suffering for our baby. We decided with the information we had that I would have a compassionate miscarriage.
Read my next post to hear about the arrival of Louis.