Miriam Carroll

My name is Miriam. I'm 38 years old, married to Aidan. We have a 2½ year-old boy Oisín and an 8-month-old daughter Orla. Orla was born with spina bifida and hydrocephalus. She is as bright as a button watching everything that goes on around her and loves when her older brother plays with her.

As far as we know Orla only has movement down to her knees and has talipes (Her feet turn in). Our hope for Orla is that she will grow up to be as independent as possible and lead as full a life as she possibly can.

Prior to my pregnancy I had been taking the regular over the counter folic acid for a year before we conceived Orla, and I led a healthy life style with very limited alcohol intake and was a non-smoker. I would have considered my diet to be relatively healthy and most meals would have been home cooked meat & veg. etc. We found out that our daughter had spina bifida at an early 17 week scan at our local hospital and then transferred to a Dublin Hospital for more detailed scans etc.

puppy dog doll on hospital bed

Q: How would you describe Orla?

Orla is 8 months old with L2/L3 spina bifida (usually affects hips and knees). She is only 8 months old she is meeting most of her milestones at the moment. She is a great sleeper and has been from the start, loves people watching and heading off in the buggy. She is quite shy for her age. To be honest at the moment you wouldn't know she had spina bifida.  

Q: Would you mind telling us a little bit about Orla's condition and how it has affected her?

Orla has spina bifida L2/L3 with hydrocephalus. She had her back closed on day 2 and a shunt inserted on day 10. She has been doing really well since birth but it's looking very likely that she will need a shunt revision in the next week or so as her head circumference is increasing, which indicates a blockage. In the next few months Orla should be starting to crawl but because of her condition this will be very unlikely, which will lead to her being frustrated etc. 

Q: How did you feel when you first found out Orla had the condition?

We were devastated when we found out Orla has spina bifida. It came as a huge shock. We felt very alone and lost as we didn't feel we were given any support by the hospital.

Q: How has spina bifida affected your family in general?

It has had a huge impact on our family. We do not have much family support so we had to arrange external assistance to mind our son after Orla was born while we were in hospital with her, and while I'm away with her for appointments. I have also had to take carers leave from my job to facilitate Orla appointments and therapy. It has also had a financial impact on our family as I'm only in receipt of carer's benefit now and there is a lot of expense involved in frequent trips to Temple Street and for therapy appointments. 

Q: Would you have any advice for other women based on your own experience?

Talk to other families with similar experience. They know best as they've been through it. And don't Google. 

Q: Are there any questions that we haven’t asked that you think are important?

Regards folic acid I feel that I've been tarnished with the non-folic-acid brush: "She mustn't have taken her folic acid because her daughter has spina bifida". I took my folic acid every day and ate healthily and I still had a child with spina bifida. In my case, and in a third of all cases, spina bifida is not preventable. But in two thirds of cases it is. So I would recommend that all women take folic acid as a supplement whether they are planning a baby right now or not.

“Thank you to the families for sharing their stories. We have changed their names in this interview at their request”