Back in May, Cookclan wrote a detailed advice article on Molar Pregnancy, and I added to her advice with my experience. She encouraged me to write it up as an article, and so finally I've plucked up the courage in October! I hope by writing this up, someone else who
is going through it wont feel as alone and freakish as I did.
I like planning things. Spontaneous is not my middle name! I decided on a 3 year gap between children and so in 2005 we got "practicing"! It didnt help that my husband then did 5 weeks working away Monday to Friday, but in month 2 I found I was pregnant!
All went well for 5 weeks, but then I started bleeding. Not a lot, but enough to worry me. I hadnt had this with my first pregnancy. Plenty of friends who I confided in said they'd bled with their pregnancies and pointed to their healthy children resulting from these pregnancies. A few shared their miscarriage stories and encouraged me to see the GP. She was very understanding and phoned there and then for a scan at the Gynae Unit in the city 48 hours later. DH was working in France that week, so I took my 2 year old with me.
What followed was one of the worst mornings of my life. In spite of the booking, the early pregnancy expert was on training in London that day, so they put me & DD in a side room for ages while they decided what to do. Thankfully I'd brought a bag full of nappies & food and she behaved herself. Eventually a male nurse came in and interviewed me. He said that as DD was there he wouldnt do an internal exam as it might freak her. In the end they sent me to the Ultrasound dept. The operators were not used to scanning so early on. I kept telling them I was 4.5 weeks gestation, but my menstrual dates suggested 6 weeks. They scaned externally and then internally. They were annoyed I had DD with me as it was "not normally allowed" so she was strapped into her pushchair. They scanned internally: "no yolk sac". In the end they decided to work on the basis that my dates were right and call me back in a week.
Eventually after 4 hours they let us leave. I had a thumping headache and was confused and anxious. A week later we went back, making sure to take DH with me! Today the early pregnancy expert was in. She was wonderful. I had been getting morning sicknes, which is unusual for me. Se said that was a good sign. She then said she would do an internal scan and talk throughout so I knew what she was seeing. Almost immediately however she fell silent. After an age she announced solemnly that she couldnt find the baby, that we should prepare ourselves for the pregnancy being over. She then took some blood samples. With hindsight, she knew what it was already.
In the car park I sadly told my daughter that "the baby has come out too early, it wasnt strong enough to live so it died". That was the nearest I came to crying - mostly I was numb. I went home via a friends house. She was the veteran of many miscarriages and said feel free to come round for some tlc if you need it. I did. DH went back to work. When I arrived home, there were 2 urgent answerphone messages from the EP Expert. The second one gave me her home number and said to ring before 7. It was now 645! I rang. She was about to leave for her 40th birthday celebration, but patiently explained that I had a molar pregnancy and she was to drop off some leaflets the next morning, I was not to panic because tho they mentioned cancer the chances were low. She said I needed an urgent D&C on the next working day. It was the Easter Bank Holiday weekend, so that meant living with it until Tuesday - as it was now Thursday. I texted a few people asking for prayer. One, a nurse, emailed me with some links to websites explaining what I had.It was the first step into feeling back in control.
My inlaws arrived over the weekend to look after DD. We didnt know if Id be kept in overnight so I briefed Grandma. Id never been away for the night. We arrived at the hospital and had a final scan before being admitted to the ward. The wonderful EP expert said they only have 3 cases of hydatidiform mole in their hospital a year. I was one of the first to be operated on that day. The nurses on the ward obviously thought i was in for a straightforward D&C as all their information under estimated how long the op & recovery would take! I was allowed out at the end of the day, very relieved to be going home. I was however shocked at how exhausted I was. In the end after a few days it was clear I needed a bit more recovery time so my inlaws took me & DD home with them on the Friday and DH followed after work with the luggage!
Then I heard nothing for 7 weeks. In the end I chased it up and discovered the surgeon's secretary was off sick. I left a message and was given an appointment to see him locally a few days later. He explained that the mole had been confirmed and that i was being transferred to the care of a London Hospital. Hydatidiform Moles are so rare that follow up is done by post from just 4 regional cancer centres in UK. I was sent a pack of tubes and instructions and verbally chided by a nurse for leaving it so late to start follow up. "Dont you realise how important this is?" I did!!!!
The important date for follow up was 8 weeks after the D&C. Blood & urine tests monitor whether the hCG levels are falling. If not, it's regrowing and cancer is a risk. I had to get my levels down to nominal 0 (4 or under) by week 8. As my first test was at week 7 I had to have an average from the next test 2 weeks later. The average was 5! I was devastated. Half the patients are back to 0 by 8 weeks, and so are on track to be signed off 6 months after the D&C. The other half are followed up for 6 months after they reach 0. I was desperate to get pregnant again. However, once pregnant there is no easy way to know if the tumour is regrowing, as you will have hCG there anyway! So its strogly advised to wait.
I was finally signed off in November. However my GP told me to wait until Id been off my migraine meds for one cycle before trying for a baby. So I had one more frustrating month to wait. And so I started trying to get pregnant again a year to the day after the last time. Happily I fell pregnant the first month. And for the first time I shed a tear when, at 6 weeks gestation, we saw the baby's heartbeat on the ultrasound! This time it was a baby not a tumour.
It had been an awful 6 weeks - I had started to bleed again just as I had the previous year. But this time it was a real baby, not the imagined one Id been cheated of the previous year. Id felt such a freak. People had said, well meaning, "I know what you feel like, when I lost my baby at 12 weeks...". But its not the same, my body was growing a benign tumour, not a baby, and I was banned from pregnancy and contraceptives for 9 months. I also had to decide whether to run a 1 in 80 risk of a further mole with subsequent pregnancies.
All pregnancy losses are a bereavement; this was mine.
How did I cope? With the love of my dear husband, family and friends. By not dwelling on the loss and especially the 1 in 5 cancer risk. By being fairly open with people about what was happening. By prayer. And by my future hope of another baby. "Hope deferred makes the heart sick" says the Bible, and so I was careful even about getting my hopes up.
If you are going through this now, feel free to Minti-mail me. I hope this helps someone!
(October 2007) (
. So perhaps now you have read about it you will one day meet someone else who has gone thru it and make them feel less of a freak just because you HAVE heard of it.
