Woman, 30, with cystic fibrosis who risks dying from pregnancy denied funding for surrogacy by NHS Sophie Gannon has had a double lung transplant and could suffer life-threatening complications from pregnancy as a result

In a few weeks Sophie Gannon and her partner Josh Thomas will move into their first home.

Next year, the couple – who have been together three-and-a-half years – plan to marry.

The 30-year-old says having children would complete their life.

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She suffers with cystic fibrosis (CF) – a genetic disorder that causes sticky mucus to build up in the lungs and digestive system. While most men with CF are infertile, fertility in women with the condition is usually normal or only slightly reduced.

However, at 23 Sophie had a double lung transplant to keep her alive. It meant that she would not be able to carry a baby without facing risky complications. These include life-threatening pre-eclampsia, premature delivery, declined lung function, and her body rejecting her new lungs.

Sophie is hoping to have a “gestational” or “host” surrogacy, where the surrogate would carry the baby after she has been implanted with an embryo created through IVF using the her egg and Josh’s sperm.

But she is “disappointed” that despite her medical challenges, she is unable to have surrogacy on the NHS.

‘It doesn’t seem fair at all’ Sophie Gannon

Generally, there isn’t public funding for this so it has to be paid for privately – although in Scotland two gay men have been offered IVF treatment including surrogacy in what is believed to be the first case of its kind in Britain.

“I’ve always wanted to have a family,” said the school office assistant. “But pregnancy is not something I’m willing to risk. My eggs are fine and because neither Josh or I have fertility problems we don’t qualify for any help. It doesn’t seem fair at all.”

Told she was going to die

‘I just try to stay positive and determined to live life to the full. I know we can be great parents who can offer a child a lot’ Sophie Gannon

Sophie, from Welling in Bexley, south east London, was hospitalised at the age of 18 with pneumonia.

In CF, which affects more than 10,400 people in the UK, the build-up of sticky mucus in the lungs can cause breathing problems and increases the risk of lung infections. Over time, the lungs may stop working properly.

At 21, Sophie was told she was going to die when her lung function dropped to about eight per cent of a healthy person.

After spending two months in hospital attached to oxygen leads and on the waiting list, she was given a double lung transplant.

“It was a very frightening time but I’m lucky that my body accepted my lungs,” she said. “There is no guarantee how long they will last, every person is different but it’s so far so good.”

The average life expectancy of a person with CF is approximately 37 years, although many live much longer. This figure is constantly increasing as researchers discover new treatments and medications.

Sophie says despite her health challenges, she works full time and is studying for a masters in education.

“I sometimes get breathless and I have digestive problems and have to take enzymes – up to 40 tablets – when I eat.

“But I just try to stay positive and determined to live life to the full. I know we can be great parents who can offer a child a lot.”

‘We want our own baby’

Sophie said Josh plans to get tested to see if he is a carrier of the faulty CF gene. If two carriers have a baby, the child has a one-in-four chance of having the disorder.

One person in 25 carries this – that’s over two million people in the UK – usually without knowing as they do not themselves have the disease, according to Cystic Fibrosis Trust.

“If Josh tested positive, we would still want to go ahead with the surrogacy,” she said. “We would have a look at the options then.”

Preimplantation genetic diagnosis makes it possible to avoid passing on serious genetic diseases such as cystic fibrosis to children. The IVF technique enables the selection of healthy embryos from a couple.

‘We want to try every option possible to have a baby naturally first. We would love the child to be ours’ Sophie Gannon

This would raise the cost of trying for a family for the couple, who have set up a GoFundMe page to pay for surrogacy privately.

Sophie says that while she wouldn’t rule it out, adoption is not for them right now.

“We want to try every option possible to have a baby naturally first,” she said. “We would love the child to be ours.”

First case in Britain

Surrogacy UK said it was not aware of any previous case where surrogacy has been fully funded on the NHS.

When it comes to women who can’t carry children or gay couples, individual CCGs make the final decision about who can have fertility treatment. Some areas have funded the IVF part of the process, leaving patients to pay the surrogacy fees.

But earlier this month it was reported in the press that an unnamed Scottish gay couple would be allowed to use sperm from one of them and surrogate mother to bear a child, after the Scottish Government changed it’s policy two years ago so any couple, regardless of gender or sexual orientation, is eligible for free fertility treatment.

Surrogacy is legal in the UK, although you are not allowed to pay for a surrogate, though you will be required to pay for any maternity expenses. Surrogacy UK say that, in their experience, expenses typically range from £7,000 to £15,000.

Sophie has been told this will cost up to £7,000 to produce the embryos, and £2,000 for each transplantation to the surrogate required.

Surrogacy arrangements are not enforceable in law, which has caused problems with surrogates keeping the child. When a child is born through surrogacy, the intended parents will need to apply to the court for a parental order – though this happens after a child is born, which campaigners say is not ideal.

‘Fertility treatment is a postcode lottery. It’s not my fault I cant carry a child’ Sophie Gannon

“It is frustrating to hear about a gay couple getting surrogacy funded in Scotland,” said Sophie. “I wouldn’t want to deny anyone else happiness, of course, but if another couple can get funding then why not us? Fertility treatment is a postcode lottery. It’s not my fault I cant carry a child.

“I feel guilt because I can’t give Josh a child easily, although he has never made me feel like I need to worry that he would leave me over it.

“It’s a lot of money we have to raise privately now and we’re not really sure how much it will cost in the end in case we need several goes.”

A spokesperson for NHS Bexley Clinical Commissioning Group, which has said it will not fund Sophie’s surrogacy, said that while it would not comment on individual cases, it follows a policy taken by all CCGs in south east London to not fund surrogacy.

An NHS England spokesperson was unable to confirm if surrogacy is funded in any areas.

Aileen Feeney, chief executive of patient charity Fertility Network, said she welcomes the news that a gay couple in Scotland have got funding for using a surrogate but that she would like to see all individuals with fertility problems having access to NHS fertility treatment.

“For couples who source their own surrogate, there is access to NHS fertility treatment in Scotland, Wales and Northern Ireland; access in England varies depending on where you live as local clinical commissioning groups have different access to NHS IVF policies.”

To donate to Sophie and Josh’s appeal, visit here.