My daughter’s battle with seizures – Sophie’s story

After giving birth at full-term, Sophie didn’t expect to enter the neonatal unit. Unfortunately her daughter Darcie began having seizures and was admitted to the NICU that evening. Here she talks about becoming more confident on the unit, and coping with the possible long-term effects of Darcie’s brain damage.

After being diagnosed with pre-eclampsia, I was quickly induced and gave birth to a beautiful baby girl, Darcie Mae, at bang on 38 weeks.

Born at full term, we had a wonderful first day together. Darcie weighed a good 6lb 11oz but was put into a heated incubator to help regulate her temperature.

That evening, things drastically changed. After my partner Nick went home, Darcie started to become unwell. She was struggling to latch and wouldn’t feed. Her heel prick test – a type of blood test performed on newborns – kept coming back as low. The midwives tried to help me to feed her, topping up the feed with formula from a cup. She started to make a strange jerking motion with her legs and the midwife agreed that this was unusual. In the morning, the midwife took me down to the neonatal unit and I showed the consultant a video of Darcie’s leg movements. I tried to call Nick but because he was driving to the hospital, he did not answer and had no idea what was going on. Just as Nick got to the hospital, the consultant decided to admit Darcie to the neonatal unit in order to monitor her.

Nick and I went back to the maternity ward to await news of what was happening. The consultant came to see us and explained that the leg movements were being caused by neonatal seizures and that Darcie would have to be taken care of in the NICU. When we were finally reunited with her, she had wires attached into her scalp and chest and cannulas in her hands and feet. It was so overwhelming to see our little girl like that and absolutely terrifying to know that she was so sick.

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Darcie was going to need an MRI, head ultrasound and lumbar puncture to rule out infection and to monitor her brain activity. Her seizures would be monitored via an EEG machine.

When the results of all the tests came back, we were left utterly heartbroken. Darcie was showing signs of infection in her blood and around her brain. It was suspected meningitis and sepsis. We were devastated. We didn’t know what was going to happen to our baby and knew that the diagnosis could put her life in danger. There is nothing more terrifying than thinking you are going to lose your baby. The results from the MRI showed that the seizures had caused a lack of oxygen to Darcie’s brain, resulting in a small amount of brain damage. The consultant said there was no way to predict how this might affect her in future.

After four days on the NICU, Darcie’s seizures stopped. Her brain activity returned to normal and she was maintaining her temperature. Having been “nil by mouth” for four days, I was finally allowed to syringe feed her.

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The following day, Darcie opened her eyes for the first time since she’d been admitted. We were allowed to give her kangaroo care and holding her again was the best feeling in the world. I began to feel less scared of and more comforted by the wires attached to her – knowing that all the technology and equipment was there to help our daughter get better. Because I work at a pharmacy, I was able to understand the purpose of each drug that was being administered and felt confident knowing that everything was working together to make sure Darcie would be ok.

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On Day Eight, we were transferred to transitional care. The staff were phenomenal and so supportive. I began to have really bad anxiety about Darcie having another seizure and the staff rallied round me to help me overcome my worries and fears.

We went home after 12 days. It was a difficult adjustment at first. I had to stick to a regimented timetable when administering Darcie’s medication and would watch her sleep to make sure she wasn’t moving abnormally.

After four months at home, all her medication was stopped and she was finally weaned off her last dosage.  Her first medicine-free day happened to land on Christmas Day and it was the best present ever. 

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We still worry about the unknown effect of Darcie’s brain damage and what it might mean for her future. When I think about it too much, I try and remember something a lovely nurse told me whilst we were on the unit: “The damage could just be the difference between Darcie becoming a doctor or a rocket scientist”. These words of comfort will always stick with me and help me to put things into perspective.

Darcie is now seven months old and is reaching all her milestones. We still have regular check-ups at the hospital but we are positive about her future, no matter what it holds.

We cannot thank the NICU staff enough for everything they did to save our baby. We are forever in their debt and have so far raised over £1,000 for our local unit as a small gesture of our gratitude for all their work.

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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