Seven years ago today was supposed to be the happiest day of our lives. Six months earlier in May we had the most amazing Wedding Day, a wonderful Church Service followed by a party that’s still talked about today, when the Welsh came to Leicestershire and the bar takings were better than Christmas.
So when I found out I was pregnant with a honeymoon baby family and friends were all ecstatic and we all wished my February due date would come quicker, well it did…… At 25 weeks and 3 days pregnant I was admitted to hospital in horrendous pain, I had HELLP syndrome. Hemolysis, elevated liver enzymes, and low platelet levels. My organs were basically packing up and my condition was deteriorating rapidly.
It was decided that our baby must be delivered. A Paediatrician from the Special Care Baby Unit came to speak to us, I remember little of that conversation other than the words, ‘ the baby has a 50 / 50 chance of survival’. Delivery was under general anaesthetic, my husband came in when I woke, and said, we have a little girl, and I asked him to get her Christened.
She was Christened Betrys Rose in the early hours of the morning while I was still on the operating table. I was wheeled over on my bed to see her afterwards, she was so tiny, 1lb 9oz to be precise, her skin was almost translucent but everything was there, every tiny finger and ever tiny toe was present.
A ventilator was tied in place using the tiniest little knitted hat you have ever seen. The days that followed are hazy for me, I remember waking and hearing my husband asking a nurse, why I was sleeping so much. I realise now how harrowing that time was for him and my family.
On day two a nurse and doctor came into my high dependency room to inform us they had done some scans and discovered Betrys had suffered a brain bleed, they explained the scale and that it was a Grade 2, it was possible it could resolve itself or possibly not. My husband and I handled these pieces of news very differently, where he would always cling onto those words ‘it might resolve’ I could never get away from ‘but possibly not’.
I recovered fairly quickly and started expressing milk for Betrys after four days, it was tough, very tough, I had little milk but I knew that I really wanted to do something to help her, and the amount she was taking through her tube was minuscule so I decided to put my all into it.
The notes in the book in the picture are my expressing times, written out for me by my Mother to remind me as my brain at that time was 99% mush. There were lots of warm flannels involved if I managed to get one tube full of milk, which I think was 30ml we cracked open a bottle of Shloer in celebration!
Betrys’s condition deteriorated, and to be honest at two weeks old she was probably worse than when she was born, she was ventilator dependant, had chronic lung disease, her blood sugars were everywhere, required many blood transfusions, she had a PDA parent ductus arteriosus a heart problem which is common in Premature Babies that was preventing her from progressing.
Every day I would be there for the doctors morning ward round to listen to their plan, for many weeks it was very bleak, her weight gain was poor, she had numerous suspected infections, her tube dislodged causing that terrifying moment when those numbers on the screen go down and down as her oxygen saturation’s plummeted, the alarms of the machines still haunt me today.
It was decided to take her to Alder Hey to try to rectify her heart problem, we were so scared she wouldn’t make the journey, she did, but on arrival the consultants decided her condition was too poor to survive the operation and they would not take the risk. We asked the doctors and Consultants,‘what happens now?’, it was explained there was little more that could be done, they would continue her care and she had to just grow her way out of it and to hope she remained infection free in the process.
Everyday we went to see her, my husband had to go back to work but would be there before and after, I would change her nappy, feed her through her tube, talk, read and sing to her.
It was hard, I had never had a baby before, I didn’t know what to do, but I knew I loved her and I had to will her to live. My life was in the hospital and expressing, everything else was on hold. I shut myself off from the outside world, when I went home I wouldn’t answer the door or my phone, I wouldn’t go to a shop or anywhere I thought I might see somebody I knew.
I felt I had let everybody down, this baby was so wanted by so many people and I couldn’t carry her. I speak to my best friend who lives 150 miles away on the phone at least three times a week but I couldn’t even speak to her. She came to visit after a few weeks, we still laugh today that when explaining how small Betrys was she compared her to the size of a plucked and dressed Partridge!
The week before Christmas I couldn’t do it anymore, I never ever give up on anything, but I got up that morning and said to my husband, I just can’t do it today. Betrys had been really poorly that week and it had taken everything out of me, so he went in on his own. I was shocked and elated to receive a phonecall mid morning to say she was doing really well and from then on she did turn a corner.
At 114 days she came home, weighing 6lb 6oz and oxygen free. It was wonderful but terrifying having her home. I was strict on visitors, everybody had to wash their hands, my husband actually developed an obsession with plastering his hands in alcohol gel, I ended up having to hide it in the cleaning cupboard, I knew he would never find it there! We had Groceries delivered and walks in the pram just around the block where nobody could breath on her!
We have been so lucky that she received such incredible care from our NHS and all the staff in SCBU Glan Clwyd we will forever be in their debt.
I decided to give up my job and devoted my life to her development. She now has minimal long term problems, her brain bleed resolved itself and she is doing very well at school.
Today she becomes a big seven year old girl, she’s dancing obsessed, she’s feisty, she pickles my brain daily but we are immensely proud of her and we know her fight is probably why she is here with us now.
The whole experience changed me, I used to plan everything in great advance, I lived by schedules, I really don’t now. This experience showed me you really can’t. So, Happy Birthday to our miracle girl, our Betty long legs, who is now, well…..much bigger than a Partridge!