“ Counselling / support for misdiagnosed miscarriages „
This is the most personal review I will ever write. I am not writing this for rates, and I dont mind if anyone finds this uncomfortable reading if they skip this review. Only read this one sentence first. If you are someone you care about is diagnosed with miscarriage - GET A SECOND OPINION! Sorry if this comes off too strongly but do feel very strongly on this issue. Before I go farther, I will say I struggled a great deal with whether I should write this at all. If you have recently been through mc you may not want to read this. I am afraid of leaving others haunted - as I am - but am writing this only in the hopes of saving one wanted pregnancy, of helping one person know to get a second opinion.
The website I am reviewing is misdiagnosedmiscarriage.com . It is a well laid out site, although obviously not a professional/ commercial site. The main purpose of the site is to inform people of the fact that miscarriages are misdiagnosed, apparently fairly often. They also seek to provide help and support for those who have been misdaignosed, but gone on to give birth, those who fear they may have had an uneccesary d+c, and especially, those with a diagnosis now that they feel may be in error. The site provides countless stories of misdiagnosed miscarriage, as well as a forum where people can post questions and get answers, or maybe just a bit of support. It als has a faq's page and links for further help. You will see I have rated this site 5 stars. I think the ladies have done an excellent job on something that is obviously a topic they feel strongly for.
I personally did not seek help here, but it was good to know I wasnt the only one.
My story: I have a history of repeat mc and had had 7 consequetive losses before becoming pregnant with my oldest son. Because of this, i think many Doctors just wrote me off. In fact one informed me that it would be a waste of nhs resources to provide me with antenatal care as I was obviously going to miscarry anyway ( unfortunately she was right that time). All the same I had a new diagnosis, antiphospholid syndrome, and was determined to get treatment and give this pregnancy a chance.
So off I trotted to the gp for a refferal to the hospital. Unfortunately, once there, nothing could be seen on the scan but the fetal sac and I wasnt allowed the blood thinners yet. However hcg levels were taken, and again 2 days later, and I had an appointment to come back at the end of the week.
On my next appointment I was informed I had miscarried and must have a d&c. I refused. I lost it in fact. I had finally reached the point where I could no longer cope, or think rationally and decided to stay with the baby, one way or the other. Basically I was planning suicide, but couldnt get my husband out of the house. Then i dont know why, something told me to call for the hcg results and I did. They ahd more than doubled and the receptionist informed me they ahd changed their minds about the miscarriage based on that. I asked if they were planning to phone me, and she said no, they would have sent a letter out in a few weeks to advise to attend the healthy pregnancy clinic. Of course i would have miscarried by that point anyway without the blood thinners and after an extremely difficult time, I was allowed to start these while waiting for the next scan a week later.
One week later I was given the bad news again. There was no growth, no heartbeat, only a fetal pole. I had definately miscarried according to the very young Dr. Then the midwife spoke up and asked the Dr to move the scanner lower. He refused. A heated argument ensued whle I lay there in shock with the midwife insisting she saw something and the Dr insisting she was wrong, as he could clearly see the fetal pole etc... Finally he gave in saying something like "just to shut you up" to the midwife, who let out a happy "there it is, there's the heartbeat" as she took my hand. I cried my eyes out and the Dr begrudgingly agreed to keep me on the blood thinners and refer me for regular antenatal care.
He enver apologised to me or the midiwfe, and she was gone before I could thank her.
My son, who would have been lost to a d&c is now 5 and I have another healthy son as well, being given the bloodthinners by my gp right after the + test the next time. My boys are the light of my life and never a day passes without me thanking God for them. But I will have nightmares as long as live about other d&c's now. What if I was wrong?
All the same I thought I was an isolated case. It appears my son was a twin and we lost one, thus causing the mix up. But then i met a neighbour who had had a misdiagnosed mc and knew another girl who had as well. Then I found this site. Only this month the papers had reports of 12 women in the south told to have d&c's who had refused and had healthy babies. What about all the ones who went along with the doctors? How many wanted babies have been lost? I finally decided to write about this in the hopes that the more people know, the more women will ask for second opinions. There are currently moves to require two doctors and two scan machines before advising for d&c. I hope this is brought into practice as soon as possible.
If anyone should ever find themself in this position and want to talk, feel free to message me.