Feature: Hughes Syndrome

Sharon Montgomery is the proud mother of six-year old Benedict, who is the picture of a healthy young son.

But, Benedict is extra special to Sharon and husband Adrian because he is the child they never thought they would have.

Sharon, 41, suffers from Hughes syndrome, also known as "sticky blood" syndrome.

She has endured four miscarriages and two of her children died shortly after birth.

Now Sharon is concentrating on helping to promote awareness of the disease through the Hughes Syndromw Foundation.

Early indications are that Hughes syndrome could affect as many as one in 200 people in high risk groups.

The aim of the newly-formed Hughes Syndrome Foundation is to offer understanding and support to sufferers and provide information and education to raise awareness in both patients and the medical community.

It also aims to promote further research into the syndrome.

The condition got its name when, during research in London in 1983, Dr Graham Hughes discovered a cluster of patients had a disorder characterised by blood clotting both in the arteries and veins.

It was an important cause of thrombotic disease including strokes, chorea, heart valve disease and, most commonly, recurrent pregnancy loss.

Hughes syndrome is believed to cause miscarriages because the woman's "sticky blood" is unable to travel along the smallest blood vessels in the placenta, causing it to wither and the embryo fails to thrive.

Sharon Montgomery's problems were complicated because she also suffered from the chronic inflammatory condition lupus.

She first became ill in 1979, suffering from severe coughing, joint pains and shortness of breath. She was seen by a consultant rheumatologist who immediately admitted her to hospital as her heart had become enlarged and her kidneys were failing.

She was monitored for four weeks before being diagnosed with lupus. Sharon, who has always lived in Brighton, was confined to a wheelchair for several months and had to postpone her wedding.

She and Adrian eventually married in 1981 and Sharon became pregnant the next year.

But the amount of medication she was taking and her unstable condition led to her losing the baby early in the pregnancy. In 1986 she became pregnant again but miscarried at eight weeks.

Sharon said: "We were both devastated and were beginning to think we would never be able to have a child.

"It was at this point that I was referred to Dr Hughes and diagnosed with Hughes syndrome. He was extremely supportive and told me there was still a good chance that I could have a child although there was still a risk and I would need careful monitoring."

In 1987 Sharon gave birth to a baby girl, Maxine, weighing only 1lb but she died three months later.

In 1989 the couple tried again but at 15 weeks the baby died and another pregnancy ended at 26 weeks in 1990.

Three years later Sharon gave birth to Matthew, who weighed a little more than Maxine but he died four days later. Sharon said: "By now we had more or less decided to give up. But we were desperate to have a child and so we agreed to have one more go."

This time Sharon was given daily injections of anti-blood clotting agent herapin and travelled to Dr Hughes's clinic in London for weekly scans.

She was admitted to St Thomas's Hospital in London early in the pregnancy so she could have complete rest.

Sharon said: "We reached the 28-week stage and things were going OK and the pregnancy continued to 32 weeks."

Sharon then developed problems with her blood flow and blood pressure and Benedict was born by Caesarean section in 1995, weighing just 3lb.

Sharon said: "He simply went from strength to strength and we have never looked back.

"Benedict has made such a fantastic impact on our lives that it makes all the previous heartaches worthwhile."

More details about the Hughes Syndrome Foundation, based at St Thomas' Hospital, are available on 020 7960 5561 or at www.hughes-syndrome.org