Patients Talking In The Sunday Express Today
My client Soozi Rowbotham, founder of Patients Talking is featured in today’s Sunday Express.
In a fabulous piece, spread over two pages of the newspaper with photos, Soozi tells her dramatic story of how she founded Patients Talking after IVF almost killed her and her baby.
I have been talking to the Sunday Express for weeks on this one so it’s wonderful to finally see it in print and such a fantastic show as well. I’m very pleased for Soozi, who I know will be delighted.
Here is the piece:
I Love my son but if I’d known IVF could have killed us both, I would have adopted
When Soozi Rowbotham suffered a rare complication of IVF she lost one twin and both she and the other baby could have died. One of the hardest things, she tells Michelle Stanistreet, was the isolation, so she has set up a website to help others.
Like many newlyweds, Soozi Rowbotham was looking forward to motherhood and began to try for a baby soon after her wedding seven years ago.
But Soozi’s excitement turned sour when, month after month, she and her husband, Jonathon, faced disappointment. Eventually the couple turned to IVF and their dream appeared to have come true.
But the situation turned into a nightmare when Soozi was diagnosed with ovarian hyper stimulation syndrome (OHSS), a rare but potentially deadly complication of IVF that affects less than one per cent of women undergoing the treatment. It occurs when the ovaries over-react to treatment and rapidly swell up.
“We’d exhausted all routes to having a baby naturally so we turned to IVF,” explains Soozi, 41. “Like a lot of couples out there, we were told that our problem was ‘unexplained infertility.’ It’s an incredible blow when you’re desperate to have a child. IVF seemed like our only option to have a child of our own.”
The prospect of a baby put the physical process of IVF and the thought of possible complications right down at the bottom of Soozi’s concerns. “Of course you realise that there are risks involved, and the mention of OHSS is there on the forms that you sign, but in very small type.”
Sadly for Soozi, she became one of the few who experience deadly complications from IVF after three viable embryos were implanted. “Two of the embryos took. I already knew I was susceptible to OHSS because when the doctors had extracted my eggs, they’d hoped for 13 or 14 but I had over 40,” she explains.
But it wasn’t until the embryos were implanted that the symptoms took hold. “My body ached everywhere and I was in incredible pain. My doctor said I’d be ok, but eventually I had to go to hospital.”
Soozi spent three nailbiting weeks in hospital coping with pain so bad that she even considered terminating the pregnancy she had spent years hoping for.
“In order to prevent my organs shutting down, I was injected with an awful lot of water and kept in a bloated state. Within two weeks I was 30pounds heavier, even though I wasn’t able to eat. I felt so ill and so desperate I asked my doctor if I should terminate the pregnancy.”
She was told to “hang on in there” and eventually sent home, though she was clearly unwell. “I was swollen beyond imagination. It was Easter time and I looked like an easter egg,” she says with a wry laugh.
Soozi did indeed hang on in there, determined to battle on and keep her baby - by this time, one of the twins she was carrying had died - and she focussed on sustaining her health as best she could to carry her remaining baby to term.
But one complication led to another and she developed life-threatening blood clots in her neck. The only option was to take daily injections of blood thinners and hope for the best.
“It was horrendous, such a stressful time,” recalls Soozi. “I started to become a regular night visitor at my local hospital. The diagnosis of my neck was so difficult the doctors took photos that they use now for the students at Cambridge Hospital! I was still pregnant, but I was so far from the normal expectant mother.
I didn’t feel the joys at all. I spent the whole time worrying about which way it was all going to go, whether I’d survive the pregnancy and whether my baby would come out of it all healthy and well.”
The stress and isolation of battling a rare condition led Soozi to turn to the internet for information and comfort.
“Sadly, I was released from hospital without much information about my condition or what I could do to help it.
I was desperate to read or hear from someone who had the same condition as me. I felt so isolated anf adrift. I looked and searched online but it was actually really difficult to locate the kind of information and support I wanted and that would have been helpful to me and my family.”
It was this experience that led to a light-bulb moment for Soozi, and remarkably, despite battling a life-threatening condition, she came up with an idea for an online resource for people suffering from rare illnesses.
“I woke up my husband one night and said, ‘I’ve got it!’” recalls Soozi. “I wanted a site where patients could write about their conditions, where people could go and read good stories and bad. Nothing like that existed and I just knew I had to set it up. It was actually really positive for me to have that idea, which quickly became a real project, to focus on when I was having such a terrible time. I wanted to make sure this didn’t happen to anyone else.”
From this germ of an idea Patients Talking was born. Today it has over 800 patients on the site, giving people the opportunity to swop notes and make contact with others in the same situation. The site is popular with doctors as it does not offer diagnoses, merely support.
“Some people write daily, about how they’re feeling and how their day has gone. Others check in every now and then - people’s friends and loved ones who want to read about the condition have also found it really helpful.”
Soozi’s story had a very happy ending three years ago with the birth of son McKenzie Bartholomew (named after Barts, the hospital that “mixed him”). However, the legacy of OHSS lingers and Soozi now also suffers from Thoracic outlet syndrome which causes pain on the left side of her body and can make it hard for her to pick things up.
“I know I was one of the lucky ones really. The majority of people with such severe OHSS lose their baby, a few suffer from heart attacks and there’s the risk of brain damage.”
While clearly thankful to IVF for making her a mother at last, Soozi does feel that the risks of fertility treatment are not taken sufficiently seriously. With older celebrity mothers parading their IVF success stories there is perhaps a tendency to ignore the fact that this is invasive and stressful treatment which often fails and which can entail problems.
“The problem is that IVF is so successful, women don’t really consider the risks, or just think it’s a risk worth taking. Having McKenzie was wonderful, we were thrilled, but if I had known what would have happened I would never have had IVF,” says Soozi.
Instead, she insists, the couple would have adopted. And with the couples thoughts turning to expanding their family, this is just what they hope to do. “We’d love another child, we’ve got all the adoption forms now but it’s a long process, the ideal thing would be if it happened naturally.”
www.patientstalking.com