Spina bifida

“Spina bifida is a type of birth defect called a neural tube defect. It occurs when the bones of the spine (vertebrae) don’t form properly around part of the baby’s spinal cord. Spina bifida can be mild or severe.”

You never want to hear that your baby is poorly with what can be a very severe disability. You go for your 20 week anomaly scan expecting a cute photo and to hear that everything is perfect, but the reality is that this does not always happen.
I have been the woman sat in the side room of the maternity unit, the room nobody ever wants to step foot in, the room that brings bad news and not much positivity in regards to your baby scan. I am a mother who lost my first baby due to spina bifida. I am now the woman who is a mother of a 2 year old, a 2 year old who has Spina bifida.

Back in 2012 I found out I was pregnant, once we had got over the shock of finding out, we where thrilled. The first trimester went so quickly and we were so excited to find out the sex of our baby. We booked a private dating scan for 16 weeks as I am so impatient! The first scan the sonogpraher said she thought baby was a girl but as baby was in an awkward position we had to go back a week later. It was then confirmed that our baby was definitely a girl. When it was time for our 20 week scan we expected to walk in, confirm the sex & double check that every was ok but sadly that was not what happened. We found out that our little girl had a very severe form of Spina bifida that had very cruelty restricted her brain growth and the prognosis was not good. What followed was a week of hell and we sadly lost our baby girl, who we named Isabelle Grace.

Fast forward to 2014 and we found I was expecting again, this time instead of initial excitement I was petrified. I’d taken all the advice from my consultant, I lost 3 stone in weight and I had been taking my folic acid 3 months prior to conception. All of our scans where positive, we had extra scans with our consultant and he confirmed everything was okay with our baby (which was a boy).

My labour was relatively smooth, I had very high blood pressure but baby was fine and we had a normal delivery. Straight away I was looking at his back for any abnormalities and I noticed a lump on the bottom of Thomas’ spine. I was besides myself with worry, I couldn’t help think the worst. We had a doctor come in and check him over and it wasn’t thought to be anything serious. One week before Christmas Thomas had his first MRI scan at less than 8 weeks old, I got a phone call on Christmas Eve to tell me that my baby boy did in fact have Spina bifida. I cannot put into words what I was thinking or feeling, I was extremely worried wondering if he’d ever be able to walk.

My little Thomas is amazing, he has met his milestones early and has been walking since his first birthday, he has had multiple MRI scans and an ultrasound. He’s not yet required surgery and our neurosurgeon is so pleased with his progress, so much so that we now only need to attend his clinic every 12 months. I am still worried & anxious for Thomas’ future but I try not to think about that. I focus on the now and all the stuff he can do.


Thanks for reading,

Louise x

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