HAVE you heard of a molar pregnancy?
Neither had Beth Young until she went for a routine ultrasound scan with her husband Jeff last year.
The couple had married three months earlier and were delighted to be expecting a baby. But their joy soon turned to tragedy.
“I knew something was wrong as soon as the sonographer turned the screen away from us so we couldn’t see it,” said Beth.
The reason he did this was because there was no baby to see.
Beth, 38, of Hillside Gardens, Wittering, was diagnosed with gestational trophoblastic disease, commonly known as molar pregnancy, in July, 2010. She was only given the all-clear in January.
Now she has decided to speak publicly about what happened in a bid to raise awareness of the condition.
She wants to begin fundraising for the three hospitals in the UK and Ireland which specialise in treating the disease.
“My story is one of loss, despair and loneliness, one which only a woman who has been diagnosed with a molar pregnancy would truly understand,” she said.
After trying to conceive for a year the couple were thrilled on the day they returned from their honeymoon to find a pregnancy test was positive. The pregnancy was confirmed by her GP and she was referred to a midwife.
May 27, 2010 should have been a happy day for them as they turned up at maternity unit at Peterborough District Hospital for the all-important 12-week scan.
“I was showing signs even at this stage, I was bloated and tired and already wearing maternity clothes,” said Beth. “It wasn’t until I was about 11 weeks that we started to relax a little. Then I started to bleed very slightly.”
Although this is not uncommon, the scan date was brought forward.
“We arrived and sat in the waiting room with other expectant mums with thoughts of baby names on our minds,” she said.
“We had nicknamed the 11-week bump ‘Billabong baby’. But in the midst of all our positive thoughts we obviously had our concerns too.”
The next hour proved devastating.
“As the sonographer worked he gently turned the monitor screen away from our view as he continued to scan my bump,” she said.
“There was a mumbled mention of my pregnancy dates not tying in with what he was seeing. Afterwards, Jeff and I were asked to wait for a doctor to have a chat with us.”
“The fear was disabling. We waited for the doctor in utter silence, I could feel my pulse pumping and felt Jeff’s hand sweating as he held mine.
“We were ushered into a room with two plastic chairs and a desk. A nurse stood to the side with some files in her arms and Jeff crouched down next to me and held my hands tightly as we listened to the shattering news.
“As soon as the doctor said: ‘I’m very sorry to tell you . . .’ I broke down and my crying was uncontrollable.
“He gently told us I had what he suspected was a missed miscarriage and the scan revealed a mass of ‘snow’ but no baby.
“He suspected it was a molar pregnancy or GTD and he tried to explain what that was. He advised us not to research it on the internet because of a lot of misguided information but we had to find out more.”
Beth was told she would have an evacuation procedure the next day and the results would be sent for examination to Charing Cross Hospital, the nearest specialist centre, to confirm the diagnosis. She would then be registered for treatment there.
“This news changed our lives in an instant but what transpired over the next year was equally traumatic,” she said.
“We went through a journey of loss, uncertainty, fear and, finally, chemotherapy. Eight months on from the all-clear signal we are only now getting our lives back to normal.
“Sadly it’s not just the loss of an expected baby but the frightening aspect of waiting for results and possible treatment which is difficult.”
Molar pregnancy is when a non-viable fertilised egg implants in the womb and out-of-control placenta cells form a hydatidiform mole which grows abnormally and almost always results in spontaneous abortion.
It is a common complication of pregnancy, estimated at 1 in 1,200 in the UK, with most women never aware of it.
About 80 per cent of the moles are benign and the chances of it happening again in a subsequent pregnancy are low.
In Beth’s case the mole was pre-cancerous and treatable by mild chemotherapy but in a tiny number of cases a malignant tumour will form, requiring more intensive chemotherapy and likely loss of fertility.
Fortunately, chemotherapy did not make her infertile and in four months time the couple will be able to try for another baby. She already has a 16-year-old daughter from a previous relationship.
Trophoblast disease is rare but usually easily curable. It is not well understood at most hospitals.
“Most patients will not have heard of it. In my case I was completely in the dark for weeks.”
Trophoblast cells grow quickly and produce HCG (human chorionic gonadotrophin) which gives a positive pregnancy test reading. Most molar pregnancies are diagnosed early and evacuation treatment is usually sufficient.
But Beth had five months of chemotherapy with five months off work from her job as project officer for a Peterborough-based travel technology company.
She is full of praise for staff at Charing Cross Hospital whom she describes as “absolutely out of this world – such caring professionals”.
She is hoping to start a self-help group for this area.
“I am very strong-minded and had family and friends around me but there will be women diagnosed who are alone and in great need of emotional support,” she said.
The Cancer Treatment and Research Trust, a charity based at Charing Cross Hospital, has asked women like Beth to spread the word and help fund research into improving detection rates and treatment.
A team is already working on a genetic fingerprint test but needs an estimated £2m.
Beth is asking individuals or businesses to donate an item for a fundraising raffle – you can e-mail her on email@example.com To make a donation go to www.justgiving.com/Beth-Young1973.