The `agonising decision' to have a termination

Ellen had a healthy, normal girl before her second child, Sam, was born with a rare, devastating mental handicap which will leave…

Ellen had a healthy, normal girl before her second child, Sam, was born with a rare, devastating mental handicap which will leave him highly dependent for the rest of his life.

Ellen lives in the Republic, but close enough to the Border that Sam was born in the North - if he hadn't been, the outcome for Ellen and her family might have been very different.

When Sam was born, Ellen was offered genetic counselling and informed that any further children born to her would have a one-in-four chance of inheriting the condition affecting Sam. The condition was so rare that the health services weren't even sure what sort of support to offer.

"You are thrown into this. You know very little about the condition and the professionals are unable to offer the support because they know nothing about it," says Ellen.

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Sam had to be taught to suck, crawl, sit and walk. "Every week, I would attend medical appointments with Sam, never getting any answers. It's about doing what you have to do. You just go on. Other parents might see me as devoted, but it's just about survival," says Ellen.

Ellen and her family love Sam, a "very sociable little fella" who loves his family unconditionally and has given them many insights into living in the moment and not caring so much about material things.

"I think he is much wiser than we give him credit for and we have a lot to learn from him," says Ellen.

Ellen wanted another chance to have a healthy baby. Before trying to become pregnant again, she consulted genetic counsellors and an obstetrician specialising in foetal assessment. She learned that amniocentesis would tell her whether or not any baby she was carrying had inherited Sam's condition. Ellen decided - with her supportive partner - that were she to become pregnant again, she would have amniocentesis. If the baby was affected, she would have a termination. In the North, under case law, terminations may be conducted in cases of foetal abnormalities.

Ellen became pregnant with twins and it was "sheer joy" initially, but then the doubts crept in. The weeks waiting for the amniocentesis and the result were the toughest of her life. It was an emotional time, but she was determined that if the news was bad, she would have a termination. The news was bad: both twins were affected and were unlikely to survive in the womb. The next day, Ellen had a termination.

"It was an agonising decision and I believe it is important to think it through carefully before you get the result so that you know what you will do, because at that stage, you're in no fit state to make a decision," she advises.

"We were so lucky going through this in the North, where we had pre- and post-termination counselling and genetic counselling at Belfast City Hospital.

"It was the right decision for us," says Ellen. "It was hard enough coping with one child with a severe mental handicap, who would not be functioning as well as he is now if I had not been able to give him the attention I have. I could not have coped with three children with mental handicap and given them all the attention they deserved. I feared that with three children with mental handicap, my marriage would have been gone, I would have been gone and there would have been four children motherless," she says.

Subsequently, Ellen became pregnant again and gave birth to a healthy baby girl. One of Ellen's daughters is a carrier of Sam's condition, and by the time she is old enough to consider having a family, she and her future partner will have to face the dilemmas which Ellen has dealt with.

"People say, when someone has a mentally disabled child: `It's such a sweet baby. How could you not love it?' But while that baby doesn't stay a baby, he doesn't grow out of the condition. I don't want to whinge, but anyone in the position will understand that you are very isolated and alone dealing with it."

Names have been changed to protect identity.