This is chapter 4 of a true Cinderella story; the story of my first baby’s life and death. D is for Death a subject for some reason I like to blog about!
In my book ‘Every Family Has One’ the difficulties Kathleen faces in childbirth mirror some of my own experiences. But my baby didn’t die in childbirth. But as you will find out later in this serial of her life it might have been better if she had died at birth. It’s something I have often pondered.
Here’s the link to ‘Every Family Has One’:
CHAPTER 4
I was induced but after a number of hours my cervix wasn’t dilating but the pain was growing.
A doctor came in to the room and asked ‘how much do you want us to help this baby through labour?’
Her heart was now in distress and the doctor added ‘given there is a high chance this baby could be mentally handicapped do you want us to resuscitate her?’
But how could they ask such a question? I didn’t know. I was in pain, I wanted it to all be over. I couldn’t think of all the options and I wasn’t a doctor!
‘Do what you can’ we said. Whatever that meant. Years later as I remember back a better answer may have been ‘you’re the doctor. You decide!’
I was then told I would have to undergo a caesarian section. They told me I would have a general anesthetic. ‘Was I aware of the risks?’ But I was in pain. How could I think what they were asking? Was there a choice? I wasn’t in a state of mind to answer their questions and then the most agonizingly painful thing happened. The most painful thing that I’ve ever had in my life! A catheter was fitted. I screamed the place down. I was burning in a pit of fire. Then they put a mask over my face to anaesthetize me. Why couldn’t they have done this after fitting the catheter?!!
After the birth I went to another floor and slept for 16 hours. Cinderella had survived birth and was in the special baby unit. My husband was there when I woke and kept saying ‘you’ve got to come down and see her. She’s adorable. She’s in an incubator and doing well.’
But I wasn’t overjoyed, or relieved. I didn’t feel anything. All I felt was the agonizing pain of thrush and the effects of the catheter. All I could think of was the pain the catheter had caused.
A nurse came with a wheelchair and insisted I get up but I didn’t want to. And I didn’t want to see the baby. I wanted the nurses to look after her. I didn’t want anything to do with her. She was going to die…. wasn’t she? How had she survived? Something wasn’t right. The sooner I accepted her inevitable death the better. ‘I’ll go and see her tomorrow’ I kept saying. Several days passed.
Eventually I was wheeled down to Arthur Farre baby unit. The air was warm and close and there were decorations hanging everywhere and pictures of babies on the walls – the success stories. Instantly I felt uplifted. There was clicking, ticking and bleeping and it was all a bit confusing.
Cinderella, or Cindy as we called her was like a tiny doll. She weighed 2lbs 14 oz. I gasped in shock. She was wearing a tiny pink bonnet that looked like a tea cosy and was wrapped in bubble wrap. She didn’t look like the polaroid photo Neil had shown me a few days back. Her head fitted into the palm of my hand – and my hands are small! Her legs were like sticks and her arms were the size of a man’s index finger. It was incredible. I was encouraged to start changing her nappy through a hole in the incubator. Changing her was like stuffing a small chicken! I had been expressing milk for her from the third day when the milk came through which was fed through a tube – 10 mls every hour. I continued expressing milk for several weeks and felt very guilty when I found I had to stop.
After two months we were transferred by ambulance down to Chichester hospital. I talked to the nurse, Liz during the 3 hour journey and Liz was someone I will never forget. She was undoubtedly the nicest person I have ever met and sadly I never saw her again.
At Chichester Cindy developed hypocalcaemia – raised calcium in the blood. She was prescribed a low calcium milk mixed with breast milk. We then spent a week at Great Ormond Street trying to find out why she had raised calcium but there were no answers. She was also examined by the geneticists who wanted to give her collection of symptoms a name but they had no answers.
All along the way Neil my husband kept googling for answers and had become quite knowledgeable. The doctors were always impressed by his knowledge and kept asking ‘are you a doctor?’ But then when they found out he had looked up the conditions on the internet they said ‘gosh you have the internet.’
At Great Ormond Street Cindy had an echo which revealed that her heart valve running from the collecting chamber was too narrow. She would need open heart surgery in a few months but they seemed hopeful because at that stage she was putting on lots of weight and filling out.
But things were about to take a turn for the worst…
Find out more tomorrow!