Eleanor is sharing a very personal story on her baby’s experience with hypoxic-ischaemic encephalopathy (HIE) and how she is managing the day to day experience as a parent. According to the NHS, hypoxic-ischaemic encephalopathy (HIE) is a lack of oxygen and/or blood flow getting to the baby from the placenta during the birthing process. Sometimes this is also referred to as asphyxia or birth asphyxia.
Hello, I’m Ellie.
I’m 21 and a mum of 2. Having a baby is such an exciting time! Everyone is keen to know what your baby’s gender is and the phrase ‘it does not matter, as long as they’re healthy’ is said a lot. But what happens if your baby is not healthy? This is our birth story of having a baby that wasn’t born healthy.
OUR BIRTH STORY: HAVING BEA
I had a normal pregnancy and birth with my first child, Theo. We never expected anything to go wrong with our second child. My pregnancy with Bea was fairly straightforward, apart from some hospital visits for reduced movements. When I went into labour, everything seemed okay and there were no signs of anything going wrong. Without going into too much detail, we had a sudden placental abruption and I was given general anaesthesia for a crash-c section. Bea was born in extremely poor condition and was intubated shortly after birth. After this, we went straight to the special care baby unit (SCBU).
She went without oxygen due to the abruption and we later found out that this caused her to have profound brain damage. Bea was therapeutically cooled for 72 hours to try and stop any further damage to her brain and sedated to make her comfortable. She was having seizures, and as a mother, this was one of the worst experience for me. Her eyes would flicker from left to right and her arms and legs would have tremors. It was awful to watch this happen to our newborn.
MEETING MY CHILD
I had lost 3 litres of blood and had a hard recovery ahead of me. Bea was born at 7.51 AM and I finally got to meet her in the evening. They had to wheel my bed into SCBU as I was on a morphine drip and could barely move. Long story short, she spent 2 hard weeks in the unit. It seemed to last forever and felt much longer than 2 weeks. We first got to hold her when she was 4 days old (I think!) and it was the best feeling! It was scary at first as she was still on the ventilator and attached to so many tubes and wires.
After a few days, she was slowly taken off the ventilator and onto oxygen and weaned off it the day before she left hospital. Her MRI scan showed profound brain damage and no-one really knew what the future held for her. We left hospital with a diagnosis of hypoxic ischemic encephalopathy (brain damage due to lack of oxygen- HIE) and just had to wait and see how the damage would affect her.
Fast forward to 15 months later, Bea is doing fantastically well. Her first year was really scary as we were not sure if she would meet any milestones. However, Bea has smashed them all, so far! She has a weakness/coordination problem in the right side of her body and is on a monitoring pathway for children with cerebral palsy. At the time of writing this, she has not yet got a cerebral palsy diagnosis but we can see this happening in the near future.
She started walking at 10 months old and this was a shock to us as we were not sure if she would ever be able to walk! HIE has a variety of outcomes that sadly cannot be predicted from the MRI. Bea is very lucky that so far she’s fairly unaffected by her damage but this could change as she grows and changes herself. She sees occupational therapy. As parents, we are prepared for anything because no matter what, she’s our daughter and we’ll be there at her side. She’s overcome so much at such a young age and is truly my hero.
WHAT CAUSED BEA’S HIE
Bea’s HIE was caused by the placental abruption. However, HIE can be caused by a variety of things such as placental/cord issues, infections, premature birth etc. We found out that Bea’s cord and placenta weren’t functioning properly. Fortunately, we were already at the hospital when the abruption happened. The team at the hospital could not have done a better job. Everything happened so quickly and efficiently. They saved both of our lives and we’ll be forever thankful of each and every staff member involved in our care. I was 19 when I had her and I was never treated differently because of my age, which was the case when I had my first child at 17.
Children with HIE may develop a variety of associated conditions, such as cerebral palsy (CP), epilepsy, behavioural issues. Some of these conditions may not be obvious until the child is much older. I think the worst thing about HIE is the waiting as you can never be 100% sure that your child will be okay tomorrow, but this gets easier to manage as time goes on.
LOOKING BACK AND MOVING FORWARD
If I could go back to when we were in SCBU and tell myself anything, it would be to take each day as it comes and not worry about the future. To try and enjoy Bea as she is and not think about all the ‘what-ifs’. I would try not to worry about Theo as much because he was safe with his grandparents. To anyone with a new HIE diagnosis, I see you. I understand what you are going through and I am sorry that you are on this journey. I trust that you WILL get through it! There’s always hope.
Personally, I am very traumatised by the events of Bea’s birth. Till now, I struggle with panic attacks and flashbacks. I am triggered by seeing pregnant people or newborn babies. I also get very jealous of other parents who have straightforward birth stories. However, I am slowly working past this and will openly talk about it. To anyone reading this that has been affected by birth trauma, I would highly recommend talking to a health professional as there are things that can be done. Sending love to anyone out there with a similar story! Thanks for reading ours.
TELL YOUR STORY
To read more about Hypoxic-ischemic encephalopathy (HIE), click HERE.
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