Additional Needs

“I’m sorry, but your baby has spina bifida.”

Posted by Katrina Dorrian on 22nd October 2020 Additional Needs, Advice & Support, Disabilities

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We were at our 20-week anomaly scan during my pregnancy with our triplets. The technician took longer on one of the baby’s backs, but I wasn’t hugely worried since we’d been told at an earlier scan with our fetal medicine consultant (since I had 3 little people on board!) that all was ok.

Since the consultant wasn’t available, they sent the scans to her urgently and I was told to wait on a phone call. I was working a shift as a senior nurse in a home for people with neurological disabilities when the call came. I’ll never forget hearing the words “I’m sorry, but your baby has spina bifida”.

I honestly don’t even remember what happened next, it’s a blur.

For anyone who doesn’t know, spina bifida literally means “split spine”. It’s a neural tube defect that occurs in the first few weeks of pregnancy. Folic acid reduces the chances of spina bifida by around 70%. We were in the 30% who were taking folic acid (religiously) but our baby had it. As your spinal cord contains the nerves to the rest of your body, there are a multitude of complications that can occur with spina bifida.

Our son has myelomeningocele which is the most severe form. His spinal canal was open from roughly L4 (the fourth lumbar vertebrae) to S3 (the third sacral vertebrae). Imagine someone undoing a zip, that’s how I always think of it. Pretty doom and gloom right?

So what’s happened since?

Joy.

Our triplets were born at 32+4 via emergency section. Ben was the first out, he is our “healthy” boy. Chloe was born a minute later (weighing exactly the same as Ben at 4lbs 4ozs) then Jacob a minute after that! He was little, weighing just 2lbs 10ozs, but none of them needed ventilators and were classed as “feeders and growers”. Jacob’s neurosurgeon said he needed to be up to 5lbs before they could operate to close the split in his back. He had his surgery at six weeks old and then had a shunt fitted for hydrocephalus (a closely related condition, I’ve a blog on this too) a few days later. We then welcomed him home!

Pride.

Jacob has fought from day one. His determination is remarkable and watching him fight each battle has been agonising but my goodness...how my heart bursts with pride knowing he is our son. I’ve also taken such pride in how our friends and family have learnt all about spina bifida and how to best support Jacob.

Love.

Spina bifida wasn’t part of our “plan”, and I highly doubt its part of anyone’s. Of course, there are challenges, but I cannot find the right words to describe the love I feel for Jacob. Seeing my husband, Ryan, with him has also been incredible. I couldn’t have picked a better husband or Daddy for my children; he is phenomenal. Ben and Chloe are the BEST siblings Jacob could ever wish for, they love him for exactly who he is and accept every little part of him. It’s beautiful to see the bond they share.

Defiance.

We were told Jacob would never be able to stand, walk or transfer. We looked into different ways to get him up on his feet, and although the standing frames provided were brilliant, we wanted something a little less cumbersome. We found the right thing for us, and Jacob WALKED!!! My goodness...how my heart exploded with pride watching him take independent steps. He’s proved them all wrong and taken huge delight in doing so! Sometimes being told you can’t do something is all the motivation you need to get the job done.

Gratitude.

People (myself included!) complain about the National Health Service (NHS). It isn’t perfect, but if we didn’t have it we would have to factor cost into the already massive emotional battle that comes with spina bifida (and the related conditions). Jacob’s multidisciplinary team (MDT) includes: neurosurgeons, neurologists, paediatricians, physiotherapists, occupational therapists, speech and language therapists, children’s nurses, disability social workers, GP and pharmacists. I’ve probably forgotten some because it genuinely is a big MDT. How fortunate we are to live in Northern Ireland where this all comes as part of the NHS.

Since it’s October, and spina bifida awareness month (also the triplets birthday month!), the biggest message I want to communicate in this blog is HOPE.

Please contact Shine as soon as possible, they are a spina bifida charity and offer fantastic information and support. You can adapt, you will manage and you will love your baby no matter what diagnosis he/she has.