The world-famous miscarriage clinic that saved our daughter
Published: August 31, 2007 | 6685th good news item since 2003
It took Selma Holmes 10 years to get pregnant. It took her a further five years and four pregnancies to carry a baby to full term. As she now sits cuddling her two-year-old daughter, Ayshe Mae, Selma still finds it difficult to talk about the two babies she lost at 24 and 19 weeks, as well as her two early miscarriages. And she looks back in astonishment at the two needless operations she underwent before her dreams of becoming a mother finally materialised.
In fact, had it not been for the intervention of Professor Lesley Regan and her team at the Recurrent Miscarriage Clinic at St Mary’s Hospital, Paddington, Selma would probably still not be a mother.
“Before I heard of Professor Regan’s clinic, we just felt that no one really knew what was going on. Each time I complained of feeling unwell during my pregnancies I was dismissed and when they investigated they ended up doing two operations, which I didn’t need,” she says.
It took one visit to Professor Regan and a simple blood test to discover that Selma suffers from antiphospholipid, or Hughes’ syndrome. This means her blood becomes sticky during pregnancy and the risk of clots is greatly increased. In addition, the blood cannot pass through the tiny blood vessels in the placenta to reach the baby. The good news is that once diagnosed, it can be controlled with aspirin and heparin. The bad is that it can often pass undetected.
This treatment was discovered by Professor Regan and one of her colleagues 10 years ago through her work at the clinic. Now, women who take these drugs have a 75 per cent chance of having a live take-home baby, as Professor Regan calls it, instead of the 10 per cent chance they would otherwise have had.
Selma had known since her twenties that she might have difficulty conceiving. A blocked fallopian tube and polycystic ovaries meant that she was probably going to need some help. After years of trying, she and her husband, Chas, 45, finally made an an appointment with a fertility specialist. They had decided it was time for IVF. Selma, a jewellery designer, was 36. After booking the appointment, they flew to Bali for a holiday. When they got back she was pregnant.
The couple were understandably thrilled. But looking back, Selma, now 42, says she complained a lot during the pregnancy. “I felt heavy and uncomfortable all the time but everyone told me to stop worrying.”
In August 2001, a routine 20-week scan showed everything was fine. Four weeks later Selma was in labour. Kaya was born at 24 weeks and lived for 28 minutes. “A postmortem was carried out and the doctors couldn’t find anything wrong with her. I was told that my cervix had just opened and that the chances of it happening again were really rare,” says Selma.
“I was told to let my body recover for six months, and as we had already made contact with the IVF clinic before I was pregnant, we made another appointment. It had taken so long to get pregnant and I didn’t want to wait another 10 years. I got pregnant at the first attempt and at 12 weeks was given a cervical stitch in case the same thing happened.”
Once again, Selma found the pregnancy difficult. Once again her fears were dismissed. “I was told to stop trying to medicalise my pregnancy. Everyone just assumed that I was nervous because of what happened last time. I felt like the baby was coming but they told me it couldn’t because of the stitch.”
But the stitch came loose and Fouad, named for her father, was stillborn in February 2003.
The Holmes had now arranged two funerals, but neither of them could bear to give up on the idea of becoming parents. “It was an overwhelming need,” says Selma.
Once again she had to rest. This time she was told she had gone into labour because of an infection caused when the cervical stitch was done. “I do feel angry that when I complained of being uncomfortable, nobody connected the fact that I had had a stitch with my complaints. It could have been cured with a simple course of antibiotics.”
Selma’s consultant suggested a hysteroscopy to see if they could see anything wrong with her uterus. She was told there was a septum, which is like an extra muscle pushing down from the top of the uterus, restricting the baby’s space. Another operation was scheduled for its removal.
In September 2003, two years after Kaya was born, Selma started preparing for IVF once more. In October she was pregnant. In November she miscarried. Despairing of finding a solution, the Holmeses went to Great Portland Street for a second opinion. While they were there a nurse casually mentioned Professor Regan’s clinic at St Mary’s and suggested they might qualify. The couple rushed home and looked up everything they could about the clinic. Of the thousands of referrals it receives each year, only women who have had three or more early miscarriages (before 12 weeks), or one late one, are accepted.
The following March, they arrived for their first appointment. “She was so reassuring from the start and for the first time we really felt that someone wanted to get to the bottom of what was going on,” says Selma.
She had a series of blood tests and was told to go and prepare herself for pregnancy one more time. The results showed that Selma was one of nearly 20 per cent of women who have three or more miscarriages, or 35 per cent of those who have a late one, who have this so-called sticky blood syndrome. While relatively simple to treat, pregnancies have to be carefully monitored.
In July 2004, Selma had IVF once more. Again, she was successful and this time it was twins. Sadly she lost one at eight weeks. But through a rocky few months involving a second cervical stitch, a haemorrhage, a transfusion and weekly scans, the second baby survived in the womb.
At 24 weeks, Selma started to feel a pain in her cervix. She was taken to the delivery room and given steroids to help the baby’s lungs mature. Chas bought a blow-up bed and set it up next to his wife. For the next three weeks Selma lay and concentrated. On Christmas Day, Professor Regan popped into visit them. “I was taking it hour by hour, knowing that the longer she stayed in there the better it would be. I ignored everything else,” Selma says. On 27 December, three weeks after she was admitted, Ayshe Mae was born, weighing just 3lbs. Ten weeks later she was home.
The Holmeses are one of 1,000 couples a year who attend the clinic at St Mary’s. They are also one of the 800 couples who have a successful outcome following treatment there. Professor Regan says its excellent results are down to the close links between the research labs and the clinic. But those links are now under threat as the laboratories, which carry out groundbreaking research into why women repeatedly miscarry, need to be refurbished or they’ll have to close. Professor Regan is trying to raise the £1m needed to stop that happening.
“We have an 80 per cent success rate and part of that is to do with the constant flow of information between our labs and clinic,” she says. “We can do an audit of the tests we carry out and if we find that a test doesn’t change the outcome of the pregnancy then we can stop doing it and use our resources elsewhere. If the lab had to close we would very quickly see a difference in our success rate. We can’t wait for the hospital to be rebuilt over the next seven to 10 years. These woman can’t wait that long. Many don’t get to us until they’re in their late 30s anyway because they have spent so long having miscarriages. They can’t afford to wait years for treatment.”
In addition to the wealth of research that goes on at St Mary’s, there is one strange phenomenon that seems to bear no relation to the scientific facts it gathers. Yet its existence has been written about in medical papers around the world and contributes to the clinic’s amazing results.
It sounds ridiculous but it’s called the Tender Loving Care factor. “Of all the women that come to us, half of them are there because of bad luck. We do the tests and then have to say that there’s nothing wrong with them. Our research, and studies published in Scandinavia and New Zealand, has found that once someone has come to us, the next pregnancy will fare better. It seems that once a woman is part of a programme where she is being looked after and monitored, the pregnancy goes better. So it can be the case that after three miscarriages, the fourth pregnancy results in a take-home baby.”
And that is the other reason why the clinic must raise the money it needs.