Katie Quinlan 19.06.04 – 14.08.04 R.I.P
Going into labour at 2.30 pm on Friday the 18th June 2004 was meant to be one of the happiest days of our lives! Spending 11 hours in labour, I finally got to meet my little girl “Katie Christine” at 1.08 am on the 19th June 2004. She weighted 6lbs 14ozs.
It was great, I already had a little boy (Josh) with my partner John and now we had a little girl! My life was good and I couldn’t have been happier! Sadly for us that phase didn’t last too long. Shortly after Katie was born the midwife noticed that there was skin missing from five of Katie’s fingers. They didn’t know what was wrong so our little girl was taken and brought straight up to ICU in the Rotunda Hospital.
I was brought to another ward, and the days that followed felt like a complete blur. I didn’t get to hold Katie as I had done with my previous child and this felt horrible. Before being discharged on the Sunday, three nurses from Crumlin Hospital and St. James Hospital came to see me and John. They explained that they thought Katie had Epidermolysis Bullosa – EB. Although they did try to explain things to us- everything went over my head! I was completely reeling from the whole experience and apart from the five minutes after Katie birth, I hadn’t held my baby girl since.
On Tuesday 23rd August, 2004, Katie was transferred to the Nazareth ward in Our Lady’s Children’s Hospital, Crumlin. That evening John and I went in to Crumlin for the first time. Sharon Keogh the EB Nurse Specialist was holding Katie and feeding her. I will remember that moment forever, seeing my Katie being held and fed just like any other baby was a beautiful sight. The next few days seem to all run into each other and by the Thursday Katie was blistering more frequently and although she was feeding, she was having problems. She was on morphine a lot of the time now for pain.
Even though I could see that Katie was getting worse, I would go to bed each night and imagine that the next day I would be told that it had cleared up. That somehow the skin had grown back and that the doctors had gotten it wrong. Shortly after a biopsy was taken from Katie and sent off to be tested. I never stopped silently hoping. The staff at the hospital showed me and John how to hold Katie and although it was on a gel mattress at least I was able to hold her. My emotions were all over the place. Having the experience of having a previous child – I felt useless; I couldn’t take her pain away. My own little child and I couldn’t help my little girl!
Simply changing her nappy was difficult as by now her whole body was covered in bandages – all except for her face. This is when the reality of EB began hitting us. The hospital staff advised us to take lots of photos.
When Katie was four weeks old we got the results that confirmed that Katie did have Junctional Epidermolysis Bullosa (JEB) and wouldn’t live past infancy. That was the worst day for me! Knowing she would never get better. Some days I would find it hard to go in to the hospital knowing how powerless I was and knowing how much pain my little girl was in.
Katie was christened on the 25th July 2004 in the church on the grounds of Our Lady’s Children’s Hospital, Crumlin. She was in her lovely little dress with matching socks. It’s a day that we will remember forever. She looked absolutely gorgeous! Her Auntie Janette had bought her a music mobile for her cot that she loved. She would be mesmerised by the sounds. Katie also began to know our voices. She would hear us coming in to her room and her eyes would dart over to your direction. Her favourite song was “My bonnie lies over the ocean”. We would often take Katie out in her pram around the gardens of the hospital or John would take her around to the shops. These are precious memories that we will hold forever.
On the 14th August 2004, our world came crashing down. Nobody thought the decline would happen so quickly. John had taken our other kids away for a much needed break and I went up to the hospital that morning as I had done every morning up to now. I brought her out to the gardens in her pram, but something told me something was wrong – I suppose it was mother’s instinct. I brought her back up to the ward and got Katie checked. The staff said everything appeared to be fine. A few hours later I headed home planning to return again in an hour or so and rang the hospital to check she was ok. The hospital did an x-ray and gave her a bottle and all seemed ok. The nurse said she had guzzled her bottle.
At 6.20pm on the same day I received a call from the hospital – Katie was dying. I was in complete shock! I rang my mam and then Alice and Margaret Healy – neighbours of mine who were absolutely brilliant. They took me straight up to Crumlin. My Mam was already there and I just got to hold my little girl for five minutes before she passed away. Katie passed away at 6.45pm in my arms. Her daddy, brother and step sisters were devastated that they didn’t get to make it in time to say good bye.
On the Sunday all our close family and the doctors and nurses that knew Katie got to see her before her funeral – that was heart breaking! It was all beginning to settling in. She was like a little doll as she lay in her mosses basket. Katie was laid to rest in her Christening gown and her socks- I had to make sure her feet wouldn’t get cold! She was buried on the Tuesday with her Nanny and Granddad. I took some comfort knowing that at least she wasn’t on her own.
That day the sun shone so high in the sky. And although it is a day that was devastating and a day a piece of me died too – there was some relief in knowing my little girl was not in pain any more! As a mother I was crippled by grief for a long time and didn’t realise the impact of Katie’s death on other members of my family. Now I can see how hard we were all hit, grandparents, uncles and aunts and anyone who had the pleasure of knowing and meeting our little princess.
From Mam, Dad and all your brothers and sisters