Rachel's Story

When I was pregnant with Rachel I had a blood test taken at around 14 weeks followed throughout the rest of the pregnancy with several scans which were good clear pictures and I was put at ease and told everything was fine. I was very worried throughout but I couldn't have had a termination. I just know I would've regretted it. Rachel was born July27th 1993  a day I've never forgotten. Rachel was immediately taken away for
examination. Minutes later a doctor appeared by my bedside and said there's something wrong with your baby. It is unlikely she will survive, a few months perhaps but unlikely a year. She will always need antibiotics and a bad infection could be fatal to her as the damage to her brain has affected her immune system. I was then told after 11 days to take her home and enjoy whatever time she had. Rachel fed and cried like a normal baby it was hard to believe anything was wrong apart from her head being small due to microcephaly her first diagnosis. A few months later she had a follow up scan  which diagnosed Hydranencephaly. For a big part of her first year of life she cried a lot.  The only way of consoling her was holding her.  She seemed to feel secure being held. Rachel had her first minor seizure at 3 months old. They became more frequent by the time she was 1 year old with her having up to 5 a day. Since Rachel was 3 months old I have coped with the help of Rachel's older brother Kevin now (19) and her sister Claire (16). Both of them were affected by Rachel's illness as they were 11 and 8 at the time. Both of them have grown up to be good
natured and caring and although we have faced many challenges over the last nearly 8 years. I think we've done ok to get where we are. Rachel has had many illnesses like I was told she would. Between the bad times Rachel has given us so much joy and amazement we never thought we'd have. Every birthday and Christmas mean so much to us. In our situation we
take one day at a time and somehow its easier to cope.I wish everyone who cares for a special child the very best for them because they deserve it and I believe its our special love that gives them the encouragement and the will to live. I love Rachel very much and I think she's amazing, my inspiration, my miracle child ,my little girl who changed my life for the better and made me stronger than I ever was .I have a lot of  respect for everyone involved in her care as they do the very best they can for her. After the grim prognosis I was given when Rachel
was born I never once thought shed achieve all she has. Rachel knows I'm her mum, she's aware of her surroundings, she eats orally and drinks from a cup but in February 2001 she had an ng tube placed to help her gain weight and to help with feeding on the days she doesn't feel good. Since getting her feeding tube any seizures she has now are very rare, just an occasional one if she s unwell. In august this year Rachel will be into her fourth year of school although she has missed out on a lot due to illness or sleepless nights but the progress she has made at school has been beneficial to her. She holds her head up more steadily, loves the water in the hydrotherapy pool and may soon be involved with normal schoolchildren her own age. I am very proud of Rachel and feel truly blessed to have this special little girl in my life for nearly 8 years I hope with all my heart to spend many more with her. 

This is one of my poems written to Rachel

Some say you are lucky
To have a mum like me
I'm the one who's lucky
If only the world could see
Every part of you is precious
Joyous and rewarding too
I'm the one who's lucky
To have a precious little girl like you