Coping with HIE - Lydia's story

Lydia's Story Hero

Lydia Ismail's pregnancy was straightforward, but after she went into labour naturally at 41 weeks things didn't go to plan.

My pregnancy was an easy one, my husband and I were excited to be parents and were looking forward to the next stage of our lives together. We spent the nine months planning things to do once our baby was here and sharing our excitement with our family.

I had planned a hypnobirth and when I went into labour naturally at home at 41 weeks pregnant we used all of our hypnobirthing techniques to relax and manage labour. However things didn’t quite go to plan. After sleeping for the early part of labour I woke up panicked and in pain at 5.30am on 7 February 2013. I hadn’t felt my son move since the evening before so we headed to hospital for assessment.

Once at the hospital things moved very quickly, but not in the direction I was hoping it would go. I needed an emergency caesarean as my baby was in distress. Reuben was born shortly after, but he was not breathing and was pale and floppy. He required resuscitation as he was struggling to keep breathing by himself and keep his oxygen levels up. His blood tests also showed acidosis (increased acidity in the blood), and he had low blood pressure and liver and kidney damage. Reuben then had a seizure shortly after being born and also a collapsed lung. When the doctors looked at all the problems Reuben was having they realised he had Hypoxic Ischemic Encephalopathy (HIE).

HIE is a type of brain injury that comes as a result of lack of oxygen, and it was decided that at some point in labour this lack of oxygen had caused Reuben to suffer from birth asphyxia. Reuben required a treatment called therapeutic hypothermia (also known as cooling) but this could not be done at our own hospital and so he would need to be transferred to an intensive care unit.

Throughout this time I still hadn’t seen or held my newborn son and was not very aware of what was really going on around me. It was incredibly hard to take in what was happening to my little baby.

I finally got to see Reuben on his way to the ambulance so that he could be blessed. It was explained to me that Reuben had already been through a trauma and it had taken a long time to stabilise him, therefore he might not survive the journey to the intensive care unit.

Reuben arrived later that day to continue his cooling treatment and my husband and I followed the next morning. It was the longest and most painful journey of my life, but I was going to see my baby and nothing could make me happier.

Reuben needed to be cooled for 72 hours. This meant that we still couldn’t hold him, but we did get to touch him and talk to him and he got to see us! Over the following three days we filled our time by being around our little boy and watching him grow stronger and fight on. During this time I was given the Bliss parent pack and booklet on HIE.

Looking back now, the booklet was a lifeline for me as it helped me to understand what had happened and what might happen next to Reuben in simple terms. It gave me a focus to learn about what Reuben was going through and how I could interact with him during our hospital stay. At five days old, after 72 hours of cooling and 12 hours of warming back up, I finally got to hold Reuben in my arms.

Over the next week Reuben finished his treatment and was able to come home.

Once home, I went through a range of emotions, one of them being loneliness, and so I turned back to Bliss to try and find others who had been through the same journey as us. While doing this I was able to answer more questions going around in my head.

Now, watching my son growing up to be a happy little boy, I want to say to any new mums starting their journey into motherhood in a neonatal unit: you are not alone and there are loads of us here with you. There is always a rainbow after the storm.

If you have been affected by any of the issues mentioned in this post and would like support, you can view our online support pages.

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