Robyne Toseland, 36, from Cambridge, had assumed she would have a large family – but has recently been told scarring from a near-fatal blood clot 13 years ago might kill her if she becomes pregnant
A woman yearning for a baby has been told she could die if she becomes pregnant.
Robyne Toseland, 36, from Cambridge, was just 23 years old when she was first diagnosed with a near-fatal blood clot which still has a devastating impact on her life.
Since almost dying from the clot 13 years ago, she has had several others – some on her lungs – which leave scarring.
She and husband Carl, 37, who both wanted a large family, are now crushed after doctors delivered the terrible news.
The scarring left by the first clot and the ones that followed could cause severe complications – making pregnancy a matter of life or death for the 36-year-old.
Robyne said: “I always assumed I would get married then have kids, but it’s very unlikely that me and Carl will be able to have a baby now.
“The high pressure in my lungs caused by the clots makes pregnancy very dangerous for me, which is absolutely devastating.”
Her first blood clot took the biggest toll on her body, becoming so serious she was left fighting for her life in intensive care.
She said: “My husband and mum were told to prepare for the worst. They didn’t think I was going to make it.
“I was put on blood-thinning medication and was covered in heart monitors. It was a very surreal experience.”
Thankfully, the medication worked and the clot thinned out and became scar tissue.
She spent two weeks recovering in hospital before being allowed to return home.
She said: “They still weren’t sure of the cause, but at the time doctors thought it could be due to the contraceptive pill I was taking.
“When I left hospital, they warned me that it would take a long time to recover, but nothing could prepare me for the reality of that.”
She added: “I imagined it would be a couple of months, but my recovery has taken over my whole life ever since.”
But despite surviving the worst clot, it still has a devastating impact on Robyne’s health.
She now struggles to breathe as her lungs are covered in scars.
She added: “I’ve had multiple blood clots on my lungs since. It’s become a part of my life that I have had no choice but to accept.
“In 2011, I had a retroperitoneal haemorrhage – an accumulation of blood in the retroperitoneal space at the back of the abdomen.
“I lost six pints of blood into my abdomen, which medics think was because of the blood-thinning medication.”
She added: “After multiple blood transfusions, I was taken off those meds because they decided the risks outweighed the benefits.”
Her health problems have sent her back to the hospital several times, most recently in March this year when she was admitted with pneumonia.
She said: “It has started to affect my whole body. It even stopped my bowel from working properly, as the blood compressed on the nerves, so I now have a stoma bag to collect my waste.”
She added: “The issue is that as soon as I get an infection, my lungs cannot cope.
“When I was younger, doctors had considered that the contraceptive pill might be a cause factor, but I haven’t taken that for years, so it has now been ruled out.
“I was unclear on what the cause of my chronic blood clots was for years but now doctors think it could be down to antiphospholipid syndrome, which is an immune system disorder.”
It’s not only Robyne’s health that’s impacted, she’s also unable to work or have kids.
She said: “I would love to be a mum, but doctors have told me that I would likely die if I fell pregnant, which is just devastating to hear.
“There is too much pressure in my lungs, as a result of the clots, and they say it’s likely they would fail under the strain of pregnancy.”
She added: “There are alternative options, but I’m not eligible to adopt due to my health and surrogacy is very difficult.
“I’m holding out hope that one day the doctors might change their minds on how risky it is for me to get pregnant, but until then, I’ve just become an aunt to a beautiful little nephew, which is lovely.”
By speaking out about her experiences, Robyne hopes to raise awareness about clots and the impact they can have at any age.
She said: “This is part of my life now and I know a lot of people are going through similar experiences, but I don’t think there is enough awareness among the general public of just how serious blood clots are.
“I’m really passionate about raising awareness because I just don’t want people to go through anything similar.
“I’m grateful that I’m still alive, but the blood clots really have destroyed my life in a lot of ways. I don’t want other people to suffer a similar fate.”
Thrombosis is a major cause of death in the UK, but many people don’t understand its symptoms and causes, and how it can be prevented.