On the 5th March 1998 my world fell apart. Katie came into the world a very tiny and very sick baby.
Over the weekend, we had been to two hospitals, spoken to several doctors and surrounded by several machines, all of which appeared to be attached to Katie’s tiny body.
Finally on the Sunday we were given a preliminary diagnosis of Katie’s condition.
She was born with a condition known as Dextracardia, which means all Katie’s organs are on the wrong side i.e. liver, heart etc. however, after many scans we were told that only her heart is on the wrong side, twisted the wrong way and as a result had formed with large defects.
Three weeks later and armed with Feeding Tubes, Syringes, Medicines and an Apnoea Alarm monitor, we got to take Katie home. I think I may have felt every emotion over the next six months. Fear of loosing Katie, anxiety over spending so much time in hospital with Katie and how it was affecting Annie who was only two at the time. Worrying about the future and about money, would I ever work again.
I also remember a deep sense of resentment when ever I met anyone who had had a healthy baby. I remember thinking ‘I wonder do they realise how lucky they are?’.
But how I actually felt about Katie started like this:
For the first few weeks my mind concentrated on caring for her, I remember asking the special care nurse why I felt detached from Katie emotionally, she simply explained that ” in Africa, when a baby is born, the likelihood of it surviving is slim, therefore the family do not give the baby a name for two months.
I also remember when Katie was about six weeks old she got very sick, was admitted to hospital. I sat in the darkness listening to her labouring to breathe and thinking, ‘God if she is going to die, please take her now, don’t let her suffer anymore, it’s just too hard on her little body’. Outwardly I appeared to be coping all right. I made a conscious decision never to cry in front of anyone i.e. friends, doctors etc.
But one day, no different from any other day I went to pieces. Katie had thrown up her feed (which she did every time), Tony came home unexpectedly and found me sitting by the washing machine sobbing my heart out. I realised I could not keep hiding everything and I realised I was grieving for that healthy baby I would never take home.
After two long years, two heart operations and several hospitalisations we finally began to see Katie getting stronger and stronger. Today Katie is a healthy, happy student at St Brigid’s School. We don’t know what the future holds for Katie, as she has no known Syndrome, but we do know she will have more problems with her heart.
Eight years on I can honestly say we were blessed the day Katie was born, she has given so much back to us, thought us the real value of life and I am grateful every day of my life, because I got Katie.