A special Gift: a mother's story of Down's syndrome

Down's syndrome is a chromosomal disorder that affects approximately one in every 800 children and results in mental as well as physical disability. As this insert shows, information is the key to not only accepting your child's condition, but also in being able to provide the specific care that your child needs.

Four years ago Doreen Gomba gave birth to a child who seemed perfectly healthy. But a few days later she got news from doctors that her newborn son, Gift, had Down's syndrome.

"She said that Gift is not well, he is not a normal child, he has Down's syndrome. I didn't know anything about Down's syndrome. I asked her: what is Down's syndrome? She said that Down's syndrome is a genetic disorder. Your child is disabled. I became so frightened. I became so afraid, scared, that how could I give birth to a child like that."

Doreen was so shocked by the news, she found it hard to accept her son's disability. However a doctor helped her take her first steps towards realising how special her son was.

"I didn't know what to call him. And he(the doctor) said just call him Gift, because God gives you a gift and you must accept it. Your child is a gift so please call him Gift."

Her next fear was how the rest of her family was going to take the news. "How is my husband going to accept this? Because other people say in their culture there is nothing like that. I can't have a disabled child. Why must I now have that child? So I can't accept it. I said ‘No it is not my fault and it is not your fault so you have to accept it'. You must give your child love and you must accept him and treat him like the others. But still he was having these complaints. Even when his family was here, they were saying why is this child not the same as the others? He doesn't know how to talk; he's going to be a stupid child."

Doreen's husband and father to her five children left them. Now they're only income is the disability grant that Gift receives. Doreen can't get a full-time job because Gift's condition means that he is often hospitalised.

"Life is very difficult, especially Gift. Gift can be a problem really when he starts getting sick. Because of the Down's syndrome, they get chest infections. Because when they get back they have holes in their hearts. Gift was having three holes. So most of the time I must spend it there at hospital. And the sisters told me your son's life is in your hands, because whenever I'm not around at the ward he is not going to say anything to anyone, he's just going to sit there and be quite. But if he sees me coming he's going to be happy."

Doreen obtained as much information she could lay her hands on about Down's syndrome so that she could care for Gift properly. She also went to support groups. They helped her feel less alone.

"It is difficult to raise a child with Down's syndrome but as you meet other moms in the support groups, you become better. Because as you meet other moms they will tell you about the difficulties that they faced and then you also tell them and you share those stories and you feel better because you are not alone. Other moms are also having the problems that I'm having."

Although it was difficult to tell her friends and family about Gift's disability, she didn't want to hide it or make him feel ashamed.

"So I was a bit scared to tell them what's happening. But as I learnt those things through the magazine and other moms from the support group, I was so confident to tell them that my son has Down's syndrome,  he can't talk and he points at things that he wants. Even my children in the house, I sit them down and tell them that this one is not the same like you so you must treat him well. My friends, my neighbours and  my family are very supportive because I was open with them. I told them when he was youngthat my child is not well but I'm not going to hide him in the bedroom so that people cannot see him. I'm going everywhere with him, so people know him."

Doreen is determined that her son will live as normal a life as possible.

"Because now I'm learning with the children that are older than him, that they must get a job. They must work with the normal people. They mustn't be on the other side, being alone there."

Doreen believes that having Gift has made her a better mother and a more caring person.

"So that's why I say I've learnt a lot and my life has changed. I thank God for giving me this child, in the beginning I was crying and I was terrified, but now I thank him."

[Source: Health-e News, 28.10.2010 Fathima Simjee]