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Leah and Lily

Blog post by Leah Barker

When I first went into hospital in April 2011, at just short of 27 weeks pregnant, I never expected I’d be giving birth in less than a week. I had raised blood pressure as well as mild headaches and blurred vision; I’d previously read about pre-eclampsia but I didn’t think that would be a problem for me, as I’d previously been told my blood pressure was very low.

After initial scans showed that my baby hadn’t grown much since 21 weeks, the fears of the doctors were confirmed. On the day we hit 27 weeks gestation, I had to have an emergency C-section thanks to a placenta abruption. My daughter came out weighing a tiny 1lb 7oz. She was so sick that they told my family I wouldn’t wake up from the surgery in time to see her alive.

I named my tiny bump Emily-Hayden, but her nickname Lily has stuck more strongly. She fought and although she had spent approximately 40 minutes without oxygen, managed to survive. They predicted that she would be severely disabled though, with severe cerebral palsy. It really was just a waiting game to find out exactly how many problems she would have.

After three weeks of gentle strokes and no real touch, I was finally allowed to hold her. Nothing in my life has ever come close to the feeling of immense joy and excitement of this news. The second I felt her full weight in my arms I felt secure in the knowledge that she was going to be OK. Although she was still tiny I found something so comforting in feeling her so close to me. From that day on I made sure to spend some time every day cuddling her. I wasn’t always able to do Kangaroo Care as there were issues with her tubes which varied day to day. She had ups and downs which always had us either cheering or crying, but we just had to learn to deal with her news day by day.

At four months old she was finally strong enough for an MRI scan to find out exactly how much brain damage she had. The nurses were so supportive as we had already guessed it was going to be bad news. After the results came in it was an excruciating wait to hear from the doctors. Thankfully it was better news than any of us had anticipated. There was some slight damage in her motor cortex (meaning hopefully only slight cerebral palsy), but severe damaged to the back of her brain. This meant that Lily was (as far as we know) blind. The news wasn’t the best it could be, but I was so happy to learn that she would one day be able to walk and talk.

After six long months of healing and training (on my part), we finally got the news that Lily was able to come home. I was ecstatic. I knew it was going to be difficult, but I just thought if she could get through what she had, I could definitely raise a blind baby.

Lily is now three years old. She has come on leaps and bounds since the hospital, and managed to shock professionals at every turn. Day to day life is a struggle of constant visits to and from one specialist to the next, but she starts nursery in September in a school for regular children which none of us could have predicted! She is registered blind, and is still not walking or talking, but we are slowly getting closer to our goals each day. She even seems to have gained some sight as she can see lights as well as some things that are close to her face. I will never get over how far she has come and how amazingly well she has done. I just can’t wait for the day when she can tell me for sure what she can and can’t see so we can start the next chapter in her life.


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