Unable to face another baby being born with the inherited disease which affected her daughter, Hamfia Mahmood had to face some heartbreaking decisions before her family was complete. And she is now proud of the beautiful daughter who has thrived despite her illness. She tells Jan Winter her story.

THE SHEER joy of the birth of her babies is still obvious in Hamfia Mahmood's voice as she talks about her much-loved children.

But there is heartbreak too, for the two terminations she underwent. Tests had revealed both babies would have suffered the inherited disease which already affected her eldest daughter.

The terminations were such achingly painful experiences for Hamfia that she decided to put her trust in God and refuse pre-natal testing in future pregnancies.

She now enjoys the company of three other children, all of them born healthy, and is rejoicing that her first-born child Noshaba has grown up and married and is enjoying life, despite her illness, thalassaemia major.

At the age of 21 Hamfia was married to her first cousin, a common practice in the Asian community to which she belongs.

She and new husband, Akhtar Mahmood, were happy and pleased when she became pregnant and gave birth to a daughter, Noshaba. She only weighed 5lb 10oz at birth, says Hamfia. "But I was delighted, she was a lovely baby."

At the age of three months, her daughter started not to drink her milk but her mother started her on solid food and worked to feed her the best food she could find.

"At six months she was healthy and nice, she looked healthy but she stopped eating. Then she had a fever, a cold, and it wouldn't go away. We thought she was teething or something. She looked normal. Still the fever didn't go and she had had it for four or six weeks," Hamfia remembers.

The couple were then living in Nelson, Lancashire, and finally doctors took Noshaba into hospital.

Hamfia's younger brother had the blood disease thalassaemia major - a serious inherited anaemia, which leads to major health problems and death if it is not treated.

Carriers of the disease are much more prevalent in the Asian, Middle Eastern and Mediterranean communities and carriers are perfectly healthy themselves. But if a couple are both carriers, each of their children has a one in four chance of being born with the full form of the disease. If a carrier has a baby with a person who is not a carrier, there is no risk of having a child with the condition.

So when Noshaba was taken into hospital, Hamfia suddenly thought of the thalassaemia which affected her brother and mentioned it to doctors.

"At that time, 21 years ago, doctors didn't know much about thalassaemia," says Hamfia.

The family had to go for blood tests in London, where there was more expertise in dealing with the illness, and it was confirmed that Noshaba did have the illness.

"My brother had been a baby when he was diagnosed and she was 16 or 17 months by this time. All of a sudden you are in and out of hospital. It was a sad time although I was strong in myself.

"One day I saw a programme about ante-natal diagnosis. It was suggested to us that we adopt if we wanted more children. I thought it would be nice, but then when you already have your own child there and then there's another one, it would be different."

The couple thought about the predicament and as they did Noshaba started treatment, which involved blood transfusions every three or four weeks. "We were travelling to and from London, and they were pricking the baby so many times with needles to get blood and we were so upset. I was crying, my husband was cross and he said: 'Let's take her home'."

Hamfia's brother was being treated in Bradford, where the family now live, so the couple started taking Noshaba there for much of her treatment. "She had bruises on her arms from the needles. Whenever I looked at her I cried. She looked healthy but when I started reading books about the disease I worried about losing her.

"The nurse said to me not to cry when she was having her transfusions, but to think about how much better she was between transfusions. So I had a strong heart because she was alive and well, not disabled, and she could play. When I saw leaflets about how it could affect her it was really scary, you worry about if she doesn't grow very tall, how's she going to be in her life?"

Hamfia spent all the time she could with her daughter, cherishing her and making sure she ate the best things to try to keep her as healthy as possible. "I forgot everything in the world just to give her the time she needed."

The couple, though, were desperate for a brother or sister for their daughter, and one of the doctors said it might offer the chance of a bone marrow transplant. So Hamfia became pregnant and went for pre-natal testing in London.

She was devastated to be told the baby also had thalassaemia major.

"I couldn't bear to have another child suffering like this. I was in tears and crying. When something goes wrong with Noshaba it goes right to my heart."

Having a termination was a terrible decision and Hamfia was very depressed afterwards. At that time, testing was carried out later in pregnancy than now and so it was a late termination.

"I had to have a Caesarian. All I thought about was I didn't want another baby to have to have all those needles. With Noshaba, it was too much pain to my heart. I could hear her scream when she was having needles put in."

After the termination, Hamfia wrote to the doctors asking whether they were sure the baby had thalassaemia and they told her he had.

But again, Hamfia tried to be strong and put aside her suffering so Noshaba could have a playmate, despite her father's plea not to put herself through it again.

"After that I came home and I was so scared. I couldn't sleep, I had to have sleeping tablets," says Hamfia.

At this time, when she was five, Noshaba started a new treatment which removes the extra iron from the body. It means having injections into the skin of the stomach every night and infusing the drug from a small pump.

Hamfia wanted her daughter to have this because it cuts the risk of damage to the body's major organs - if this damage isn't prevented most people with beta thalassaemia die at the age of about 20.

"When I started it she used to cry. I was very strong and we used to do it together. I had to sit her on the floor and put my leg over her legs so she didn't struggle. I knew she had to have it. Then I used to go into another room and start crying, but I didn't show Noshaba that."

Hamfia found she was pregnant again - but a test revealed again the baby was affected by thalassaemia. "I understood it was wrong to have a termination but I couldn't face it for another child. I don't know what punishment I'm going to have from my God but I was desperate to have another child."

After a second termination, Hamfia was extremely low. "I said to myself that this was enough now. I said I didn't want any more tests. I'd had three children with thalassaemia and I said I was going to have three more." After this, Hamfia's father told her when he died and met God, he would ask for God's blessing on his daughter. He died soon afterwards and Hamfia herself went to a holy man in Pakistan and asked for his prayers. He also gave her a lucky charm.

Amazingly, Hamfia did go on to have three more children. Two are carriers, so are perfectly healthy, and one is completely normal. Jamal is now 16, Neelam is 14 and Waqas is ten.

Hamfia, who is 46, believes Noshaba gained a great deal from having other children in the family to play with - and continued to cherish her eldest daughter through difficult times while coping with three other young children.

At the age of 14, Noshaba was diagnosed as a diabetic and her mother has helped her through this.

Hamfia is proud of her daughter, who is now happily married and beautiful, not looking sallow or ill like some with the disorder.

She worries about the two children who are carriers, but she urges them to have potential partners tested to check whether they are carriers too.

And she stresses to the Asian community, where cousins are more likely to find they are both carriers of the condition, to become more informed about the disease and make sure carriers only marry non-carriers. Doing this, says Hamfia, would eradicate the disease.

"It makes my heart bleed when I see babies being born with thalassaemia. It makes me sad that they have to face that."

But Hamfia believes she has much to be thankful for - her daughter is greatly loved, has grown up into a beautiful woman and is receiving the treatment she needs.

Fact File:

Thalassaemia sufferers cannot make enough haemoglobin - the substance which carries oxygen to red blood cells.

This means they are unable to make enough red blood cells, leaving them dependent on blood transfusions for life.

A side effect of the blood transfusions is a build-up of iron in the blood, which is removed by regular drug injections.

In cases of thalassaemia major, people have severe anaemia which can lead to breathlessness, jaundice and sometimes physical and mental disabilities.

The UK Thalassaemia Society can be contacted on 0181 882 0011 or by email.

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