Amy-Rose Brown, 7lb 13oz, 41+3.
Tuesday 18th February 2014. By this point in my pregnancy everything had been perfect. I was however, 4 weeks into my maternity leave and growing increasingly frustrated that our little bundle of joy was yet to make an appearance. I’d had a sweep a few days before and was drinking copious volumes of raspberry leaf tea in a desperate attempt to get things moving. (I have since learned this is a myth).
My waters had broken in the night and by morning I was experiencing extremely painful contractions. Phil rushed me to hospital where I was advised that going home might be a good idea as I was only 3cm dilated and would be waiting a very long time. Something in me (probably the pain) said to stay. I was in too much discomfort and I was not leaving until this baby was born.
I had gas and air and pain relief and periodically the midwives would come and check the heartbeat. “Oh” the student midwife said. She ran out of the room.
Before I knew it I was being whisked quickly down a corridor surrounded by medical staff. I remember shouting “please help my baby”, I remember the passing of the ceiling lights as we navigated quickly through the corridors. Phil was no longer with us, he had been shut away somewhere left terrified and advised to bring in close family. A category A c-section was performed. Right up until the anaesthetic worked I was shouting and pleading. I have never been so scared.
When I eventually awoke I initially felt serene and calm. In my mind they were just “preparing” to bring me the baby. I was elated to see my parents and Phil’s mum. In my morphine induced state it took a bit of explanation to understand that things had not gone well.
The midwife entered the room, clearly traumatised herself. “This.. just doesn’t happen.. It shouldn’t have happened” (or words to that effect). She explained that Amy was incredibly poorly and required specialist care at the city hospital (St. Marys in Manchester).
We briefly met Amy who was brought to us in an incubator. We held her tiny hand and sobbed. You could barely see her for tubes. I have photographs from this moment and it always bring tears to my eyes.
Amy received cooling therapy to try and prevent further damage spreading through her brain. Her brain injury (HIE) we think was caused by aspirating meconium. She was grade 3 and had been born blue and required 8 minutes of resuscitation.
The next day we were transferred by ambulance to be with her. By this point I was screaming out for her and becoming very distressed.
We met the doctor there who advised that she likely would not make it through the night and that if she did make it, she would be a “vegetable” (her words, not mine… I very much resent this wording but understand the doctor was trying to give the worst case prognosis).
We were at NICU for 14 days. Slowly, day by day, a new tube could be removed. I remember the first wee. The first breathes without support. All of it. Every single thing was a huge victory. I remember when the cooling was turned off and she was no longer in a hypothermic state. Her fingers would wiggle and we would gasp and cheer in amazement. Everyday I would beg for her to come home. I told her about our house, about the days out I had planned, our family.
After NICU she was transferred back to our local hospital to the neonatal ward, then eventually the children’s ward. She came home at 6 weeks old.
At the time I was given so little information about HIE. One of the leaflet packs I had been given was full of leaflets about prem babies. It was very isolating and upsetting for us. A nurse had printed some information out for us to help us understand what we were dealing with. By this point Amy had failed the hearing test several times. We were also told she was blind. The nurse said to me “no matter what, never stop talking to her.” This always stuck with me. I knew that no matter what outcome our daughter had, she would be loved, adored, doted on.
Amy is now 7 years old. She is severely affected by what happened at her birth. She has quadriplegic cerebral palsy, epilepsy and is 100% tube fed. She is non mobile and non verbal but is very good at communicating her thoughts and feelings!
She adores music, family holidays, going on walks, and electronic toys. She has such a cheeky personality and the most beautiful smile. She loves school and her carers and is a really sociable, brave and amazing little girl. The outcome with HIE is so different for everyone. Apgar scores and time needed to resuscitate do not always correlate to outcome. The “wait and see” is so frustrating. When I look back I wish I knew what I know now. I wish I had spent less time grieving and more time enjoying how little she was.
She was a very distressed baby. We would appear at the hospital constantly desperately seeking something to help her settle. They were very hard times. Things can still be challenging, but they definitely got better and I am thankful everyday to those that saved her life that day.
I am so grateful that PEEPS HIE exists. It brings me so much comfort to know that others going through what we went through can find a community and will have the resources they need to learn about HIE.