'There was no baby, just a mass of tumours': Two mums share their journey with rare pregnancy condition
By Heidi Krause|
When Brianna Leigh went into her 13-week scan and was told she had lost her baby, she was devastated. ?
The mum and dietitian from Bairnsdale in Victoria had already endured a miscarriage a few months earlier.
"It was such a horrible time," she shares with 9Honey. "?To hear, 'I'm sorry there is no heartbeat', I didn't know if I could go through it again. How could we be so unlucky to have another miscarriage?"
After requesting tests to find out why she had lost her second baby, she was dealt yet another blow. Brie was told she had a 'partial molar pregnancy'.
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"I had never heard of it. The doctor told me it's very uncommon and we read through a handout together," Brie recalls.
"I was told I would need weekly testing to ensure my hormone levels were coming down, and that we wouldn't be able to start trying for another baby until they did."
The 33-year-old was also told there was a chance it could become cancer.?
"It was ?completely overwhelming, to go through the devastation of miscarriage and have this on top. I couldn't talk about it to anyone."
"It was ?completely overwhelming," she reveals. "To go through the devastation of miscarriage and then to have all these extra layers on top. I couldn't talk about it to anyone. I felt so alone."
Molar pregnancy is a rare complication of pregnancy not many people have heard of. It involves the unusual growth of cells within the placenta and affects around one in 1,000 pregnancies.
There are two types of molar pregnancy จC partial and complete. In a partial molar pregnancy, as in Brie's case, a fetus develops but it will be abnormal and cannot survive. In a complete molar pregnancy, there is no fetus. One in 100 cases will also develop into a rare form of cancer and need chemotherapy.
Unfortunately, awareness of the disease ?is very low and the diagnosis came as a huge shock for Brie.
"After the diagnosis, I turned to Google, but I couldn't find much. So I just waited for a call from the registry at the Royal Women's Hospital. Every minute felt like a lifetime. I was so scared."
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Because the condition is rare and early detection is so important, special registries (known as a Gestational Trophoblastic Disease (GTD) Registry), have been set up around the world to ?monitor and coordinate the follow-up of women who have had a molar pregnancy.
Brie was told she would need weekly blood tests to check her hCG ?(or pregnancy hormone) levels.
"I had just been through a promotion at work and was trying to hold it all together, but just waiting for the news was really tough. I just wanted to try again," she recalls.
After two months, Brie was lucky enough to be given the all-clear and fell pregnant again within two months with a little boy, Hamish.
Bonnie Cauchi also endured a molar pregnancy, but in her case, it was a complete molar that resulted in cancer.
The recruitment consultant from Melbourne, who already has a 15-year-old daughter, recalls the terrifying moment it all started when she fell pregnant in late 2021.
"I felt really sick almost as soon as I found out. I had pretty bad morning sickness with my first baby, but this nausea was another level," she explains.
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When the sonographer had trouble seeing the baby at her first ultrasound, she was told to come back a few days later.
"I went back and they said, 'I'm sorry, there is no baby, but there is something else there. Something abnormal'," she recalls.
"I was told it was a molar pregnancy. I'd never heard of it. I bawled my eyes out. I couldn't make sense of it."
"I started bleeding very, very heavily. Big clumps of tissue.? I was losing so much blood. It was terrifying."
Bonnie went through a D&C procedure (similar to a termination), to scrape out all the tissue and while initially she felt a lot better... things changed quickly.
"A few weeks later, I started bleeding very, very heavily. It was so bad I remember calling my mum and just saying, 'I can't even have a shower, I'm losing so much blood'."
"There were big clumps of tissue the size of 20 and 50 cent pieces. Pads weren't doing anything. I was flooding them. It was terrifying."
Bonnie's mum rushed her straight to emergency at the Royal Women's Hospital, where she stayed overnight and underwent blood tests and an ultrasound.
"That's when I finally got a thorough explanation of what was going on with my body," she says.
"The doctor explained that instead of flushing out the tissue, it had continued to grow. The tissue was growing like cancer, it was like grapes growing in my uterus."
"I was told they would need to start a mild chemotherapy that afternoon. Hearing the word chemo was a lot to deal with. You immediately think the worst. "
While Bonnie was nervous, she also felt reassured she was in the best hands possible.
"They were all so comforting, and knew so much about molar pregnancy. I felt like I could ask any question and they knew the answer. They are clearly the experts."
?Every week, Bonnie went in for chemotherapy injections (low-risk treatment into the muscle) and blood tests.
"I bawled my eyes out. To go from being pregnant to having chemo was really difficult."?
And while her hCG levels had dropped a little, from 110,000 to 90,000, unfortunately they weren't dropping quickly enough. It was decided Bonnie needed a stronger form of intravenous (IV) chemo at the Peter MacCallum Cancer Centre.
"I cried and bawled my eyes out. To go from being pregnant to having chemo was really difficult," Bonnie admits.
"I was there for four hours, surrounded by patients at stage 3 or 4, was definitely quite confronting. It definitely rocked me. It was devastating. Then my hair thinned out and I my veins didn't hold up well... and I became lethargic and tired."
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Bonnie ended up needing 12 rounds of strong chemo treatment. In July last year, she was given the incredible news the molar cells had stopped growing and treatment was successful.
"I was so relieved. My mum went through breast cancer a few years ago, and she told me to stay strong and that one day this will be a distant memory," she explains.
"When I think about it now, I didn't really have a chance to deal with the pregnancy loss - it was all quite urgent, and one thing after the next.
"Yes, it was hard. But it's made me stronger. Luckily, I had a really good support network."
Nobody knows why a molar pregnancy happens. There was absolutely nothing Brie or Bonnie did จC or didn't do จC to cause the condition.
It occurs when an egg is fertilised by a sperm (or two sperm), but a baby does not develop.?
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According to ?Associate Professor Orla McNally, Director of the Oncology and Dysplasia Service at The Royal Women's Hospital, a molar pregnancy is usually detected in an early ultrasound or after a miscarriage.?
"?We don't know why certain women develop a molar pregnancy, but we do know that it does seem to be more common at the extremes of reproductive age, so in teenage pregnancies and for women in their 40s. Women of Asian background also tend to have a higher incidence," she tells 9Honey.
"The good news is ?that as long as a molar pregnancy is recognised and managed properly, it is extremely treatable. It has a 100 per cent cure rate once the right treatment is given.
"Setting up the GTD Registries has made a huge difference around the world. If it's mismanaged, it can be very serious."
"On top of the pregnancy loss, women have a condition no one has heard of. That's very scary for them.?"
While there is no national GTD registry in Australia, the Royal Women's Hospital has led the way in detection and treatment and was the first to set up a state registry 40 years ago to monitor women at all stages of their journey. Queensland and ?Western Australia have more recently followed suit.
"The confronting thing is, this essentially is a pregnancy loss for a woman. Yet on top of it, they have a condition no one has heard of. That's very scary for them. So it's vital they get the right support," McNally says.
"It's time more people know about this health condition and where to go for help?."
Symptoms of a molar pregnancy?
A molar pregnancy may seem like a regular pregnancy at first, but most molar pregnancies cause symptoms that can include:
- Dark brown to bright red bleeding during the first three months
- Severe nausea and vomiting
- Sometimes grape-like cysts pass from the vagina
- Pelvic pressure or pain
For Brie and Bonnie, they are bravely sharing their stories in the hope of raising awareness about the little-known condition.
"If I'd known about it before I was diagnosed, it would have made me feel less alone,"
Brie shares. "I was so stressed and anxious for the entire pregnancy with Hamish, but he is an absolute joy. He is probably the reason I can talk about it now - because I have healed a bit from the trauma and I have him."
"It is really difficult. After losing a baby, there are no words that make you feel better. But I hope that knowing the others, like me, have gotten through may offer a glimmer of hope."?
Bonnie echoes this advice: "Reach out to whoever you can. There is a rainbow at the end of it all and you will be able try again."
You are not alone. For support around miscarriage or loss, please contact Red Nose Australia at rednose.org.au or call their 24/7 Support Line on 1300 308 307.
