Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)


Geraldine and Terry Matthews
Ellen 19/08/96
Edward’s Syndrome


Our daughter Ellen was born in August 1996 weighing 3lb 10ozs. We were sad and shocked to find out that our new baby had Edwards Syndrome and to hear of all the physical and mental disabilities she would have. But all of this was put into perspective when we were told that she was not expected to live and that we would not be taking her home with us. Ellen’s progress surprised us all and once I was comfortable with passing her feeding tube down, we got her home a month later.

Looking back now this was a very bleak time, we were afraid to love her because we knew we could lose her at any stage. Our lives changed drastically, I now became the full time carer of a sick child, surviving on very little sleep and living in fear of something happening.

Our first year consisted of endless visits to doctors, consultants and specialists.
Although we were lucky that Ellen’s heart condition was not life threatening, she suffered from a very weak chest. Her low immune system left her prone to recurring chest infections, where she needed constant suction, physiotherapy and antibiotics. Our whole lives revolved around Ellen, we didn’t know how long we had with her so we relied heavily on family and friends to care for the boys.

Although Ellen’s development was very slow every little milestone, first smile, giggle, her eyes following us around the room, was a major achievement. We had a big party for Ellen’s first birthday a day we thought we would never see. At this stage we started to watch Ellen live rather than waiting for her to die.
Over the next few years Ellen started to get stronger but she still suffered from chest infections. Because of her high muscle tone, scoliosis and poor head control, she needed to be put in her stander and on her wedge at regular intervals throughout the day. She also needed a lot of one to one attention to help develop her interactive skills.

We were very protective of Ellen and we wouldn’t go anywhere without her as we thought she couldn’t function without us. Our friend worked in the local day care centre and had always encouraged us to send Ellen. We were very reluctant to let her go but when she was five and I was pregnant with Niamh we decided to send her. This was one of the best decisions we ever made; Ellen loved all the attention from the nurses and benefitted greatly from all the sensory work in the classroom. Going to day-care gives Ellen independence and a chance to learn new skills and meet new friends. It taught us that children like Ellen are made to be shared.

Another milestone in Ellen’s life was the birth of her sister Niamh. She was no longer the only baby and missed being the centre of attention. We were shocked to see she had a jealous streak by developing a pretend cry, but this was short lived and soon Niamh became her entertainment and playmate.
Initially we felt that Ellen’s capabilities would be very limited, but she has proved us so wrong. She has achieved more than we could have ever dreamt. She can sit up balancing herself on one arm. She can roll around the floor to get to something she wants. She just loves company especially the company of other children. She loves to be in the middle when Luke, Adam and Niamh are playing a game. She always manages to get hold of the TV remote and change the station when she is sitting beside me. We need eyes in the back of our heads when we are feeding her, she always manages to get the dish and turn it upside down. When we give out she giggles and laughs. She may not be able to talk but you can see the devilment in her eyes.

For all the heartache we initially felt the happiness that Ellen has brought us could never be measured. We are very proud and honoured that God has given us a special little girl.

Geraldine Matthews