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

Carlynne found out that her daughter Zoe had spina bifida while she was pregnant. In part two of her story Carlynne describes Zoe’s birth, time in hospital and life beyond the unit

I had a planned induction at 39 weeks of pregnancy due to my daughter’s spina bifida diagnosis and my anxiety around the situation.

In the lead up to being induced, I didn’t really know how I was feeling. I just kept busy and stayed quiet. I was overwhelmed with emotions. My husband worked right up to the day before I went into hospital. Our family took us out for a meal the night before to help take my mind of everything and relax.

Six hours after my first pessary, I was still 0cm dilated. Since nothing seemed to be happening, my husband went to his brother’s flat 10 minutes away from hospital and I text him goodnight. The second pessary was put in at around 10.00pm and almost straight away contractions started. I was at 10cm by midnight.

I quickly called my husband and was moved to the labour ward. He arrived just before my waters broke. The baby’s heart rate started dropping and I was rushed into an emergency c-section. There wasn’t time to do a spinal block so I was put under general anaesthetic. When I came round I was told we had a little girl. We named her Zoe.

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Zoe went into surgery at two days old for her back closure. I was still an inpatient myself. My husband was staying at the Ronald McDonald house so he came and collected me in a chair first thing and we went to the ward. We went down to the theatre with Zoe and gave her a kiss before she went in. It was the most heart breaking thing I’ve ever had to do. We both sobbed as she was taken away.

The day is really just one big blur because we were filled with worry and nerves. The whole situation of our child not being with us and the helplessness of knowing that there was nothing we could do was so distressing. She was in surgery for almost eight hours. We sat at her empty bed space and waited for her all day. Finally we had good news - the surgery went amazingly well!

A week later Zoe had another surgery to fit a shunt to drain the fluid from her brain which had been caused by hydrocephalus. This surgery took around five hours. This shunt will be permanent for her and has been successful so far. However shunts can be temperamental and come with their risks of failure and infection. We know the signs and symptoms of this and always look out for them with Zoe.

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I felt very helpless when Zoe was in the neonatal unit. I think because I’m a nurse, I found it hard to switch off. I kept looking at the machines and the numbers and this would just make me more anxious.

My husband tried to help me feel comfortable whilst we were there because I was in a lot of pain from the c-section. He was also a great support whenever I was emotional. Our families brought us food which was wonderful because we never wanted to leave Zoe’s side; which meant we never left the unit to eat.

The staff and Bliss volunteers were always very supportive and asked if we needed anything. I am really private with how I’m feeling so I never divulged much but it was always great to know people were there to support and help us.

When we were told we could go home we were over the moon. I could not wait to get into a home environment and have our baby girl to ourselves.

We have recently moved into our new home and are making memories together as a family. It has been amazing and we couldn’t imagine life without Zoe.

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Zoe has defied everyone’s expectations. So far there is nothing to show that the lesion has affected any leg or foot movement which orthopaedics and physios are impressed with. She is such a little wriggler!

Zoe cannot empty her bladder completely on her own so she needs intermittent catheters done four times a day to drain it. It was challenging at the beginning but it has become much easier. Now more people in the family can do this which helps me a lot. Zoe also has her shunt which so far has been great and caused no issues. She has regular appointments and check-ups with many different specialists and clinics. It is really overwhelming and I struggle at times but my husband is excellent and helps me as much as he can when he’s not at work and our families have been massively supportive.

Since Zoe’s diagnosis, I have met so many amazing families with kids with spina bifida and they are all incredible warriors. Every single one is different and not every child has the same diagnosis. Some need wheelchairs, some don’t need wheelchairs. Some need shunts, some don’t need shunts. But all of them have defied the expectations of doctors and others around them.

If someone you love is expecting a baby with spina bifida, ask the parents questions and learn about the condition from them. I don’t think Google gives anyone a good insight on spina bifida. So if the parents are willing, then learn from them. Also, just be there for them. It is overwhelming. Being pregnant or becoming a first time mum can be very lonely; having everything else piled on top of this can be exhausting. They might not say it but they often just want someone to be there to cry to or laugh with.

Zoe has enriched all our lives and brings us incredible joy each and every day; we couldn’t be more proud.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages.

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