Sophie Lewis, who was born without a uterus, is hopeful that she can have a transplant – and a child.
Sophie Lewis was told at the age of 16 that she would never be able to bear a child of her own. If she wanted a family, the only options would be adoption or surrogacy. She was born without a womb.
"Everyone in school was getting periods and my mum was a bit concerned that I was not," she said. They went to the GP and then for a laparoscopic examination in hospital. Doctors broke the news that she had MRKH syndrome (read below), which affects one in 5,000 women: her uterus had not developed.
"At the age of 16, I don't think I really took it in," she said. "Obviously I wasn't at a stage of wanting children, so it didn't really affect me. As I have got a lot older, people around me are having children and the feeling is a lot stronger."
Things are different now. Lewis, 28, has been with her partner for three years and they would like to have a child. They could have a baby who is genetically their own through surrogacy, but Lewis fears the heartbreak if their surrogate changed her mind and decided to keep the child. "You are putting your trust in somebody you possibly don't know for them to carry your child for nine months and then they finally give birth to the child who they can legally keep if they want to," she says. And adoption "is so difficult – there is so much red tape".
But thanks to a remarkable medical advance, it is possible that Lewis could after all become pregnant and have her own baby. She is on the waiting list for one of the first womb transplants in the UK.
In southern Turkey, 22-year-old Derya Sert, born with the same syndrome as Lewis, is said to be six weeks pregnant. The Akdeniz University Hospital in Antalya says doctors have heard a heartbeat. While there is some tongue-clicking over the decision of the hospital to announce the pregnancy at a stage when even ordinary conceptions have a 25% chance of miscarriage, the handful of top doctors around the world who have been researching womb transplants and hope to carry them out are all holding their collective breath. Richard Smith, the UK consultant gynaecologist who has dreams of starting a womb transplant programme here, says there is no race to be first to achieve a pregnancy. A baby for Sert would be a fantastic step forward for everybody.
"I'm very, very pleased," says Smith. After 15 years of research, he has been told he can apply for the necessary ethical approval to embark on womb transplants. He will need the data he and others have from animal studies and from the few human transplants that have taken place. If Sert has a child, the case for transplants in the UK suddenly looks a lot more convincing.
"There is no reason to suppose that it won't happen. She has a normally functioning uterus and will be delivered by caesarean section at 38 or 39 weeks," says Smith, who is based at Queen Charlotte's and Chelsea hospital and Imperial College in London. But there are unknowns, he adds. "The biggest 'if' in all of this is what happens to a transplanted uterus in pregnancy. Data from animals is thin on the ground."
There are just a few experts in this field and they have got together for international conferences three times. The first was four years ago in Sweden, the home of Mats Brännström, professor of obstetrics and gynaecology at the University of Gothenburg. The second was hosted byGiuseppe del Priore, director of gynaecologic oncology at Indiana University school of medicine in the US, with whom Smith collaborates. The last was in London and the Turkish gynaecologist, Ömer Özkan, came along. Smith says they were impressed with his presentation.
Brännström in Gothenburg has already done two womb transplants – from living donors. These are mothers who have donated their wombs to their daughters, both of whom are in their 30s. One of the young women went through a hysterectomy because of cancer, while the other was born with MRKH syndrome. The operations took place last September and Brännström will wait a year – all the surgeons agree with this – before attempting to implant the embryos that are waiting in a freezer. All the transplant recipients will have to go through IVF before a transplant, to ensure they are able to create healthy embryos. There would be no point going through major surgery only to find you could not produce viable eggs.
Smith says that taking a womb from a live donor is unlikely to be permitted in the UK. "The risk to the donor is larger than the risk to the recipient," he says. "It's a four-to-five hour procedure. That's not going to be the UK approach." Like Özkan in Turkey, Smith plans to take the wombs from dead multi-organ donors.
There are 15,000 women in the UK without a womb. He will have no shortage of volunteers like Lewis. "There are 60 women who have actually approached us wanting a transplant and fall within our eligibility criteria," he says. "They have to have the capacity to create an embryo themselves, they have to be an adult and probably not over the age of 40." Smith has launched a charity, Womb Transplant UK, to share information and raise money. They need £250,000 for the first five operations.
Lewis found out about the putative transplant programme when she decided to run the London Marathon and contacted the hospital looking for a charity to support. Instead, they invited her in for a chat. "I wasn't sure I wanted to talk about it, so I put it off," she said. But eventually she went along with her partner. Now she hopes to be one of the first five to get a transplant, maybe next year.
"I'm really, really excited about it. People ask: 'Are you scared? Are you worried about what might happen?' But to be given this opportunity is such an amazing thing that I would go through everything and anything just to have the experience," she says.
She will have to take immuno-supressant drugs to prevent her immune system rejecting the uterus, which will make her vulnerable to infections. But the drugs will not affect a foetus, say doctors – women with kidney transplants who must take the drugs for the rest of their life go on to have healthy babies.
And there is a big advantage to a womb transplant. Once Lewis and her partner have their family, the womb will be removed and she can stop the immuno-supressants. She sees a bright future.
"If possible I would like three children," she says, "but I'd be happy even with one. I'd be over the moon."
www.guardian.co.uk
Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome is a disorder that occurs in females and mainly affects the reproductive system. This condition causes the vagina and uterus to be underdeveloped or absent. Affected women usually do not have menstrual periods due to the absent uterus. Often, the first noticeable sign of MRKH syndrome is that menstruation does not begin by age 16 (primary amenorrhea).
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