It’s Baby Loss Awareness Week 2021 so you’ve likely seen a lot of people talking about miscarriage and pregnancy loss. You’ll likely see even more over the next few days because not only is October Pregnancy & Infant Loss Awareness Month but on October 15th, it’ll be Pregnancy and Infant Loss Remembrance Day 2021. If now isn’t the time to talk about our trauma and share our experiences, then when is?
I recently opened up about our struggle with RPL (Recurrent Pregnancy Loss) on social media after announcing our 4th pregnancy after a string of miscarriages. I wasn’t prepared to be met with a sea of supportive messages, as well as so many women sharing their stories and asking for advice. I found it difficult to keep up with responding but immediately learned how important it was to keep the conversation going and share with each other.
I received so many of the same questions but I knew there would also be people out there that were too afraid to message too. So I’ve taken the most FAQ from my inboxes and pulled them together in this post. Apparently, sharing our story has been helpful to other people, so if my journey can provide guidance in someone else’s storm, then that’s great.
… and hey, miscarriage/pregnancy loss really shouldn’t be taboo. No one should suffer in silence because it’s an uncomfortable narrative. Let’s talk about this shit, support each other, and make the world a better place.
Trying to Conceive
Could you get pregnant easily/quickly?
Yes getting pregnant was never an issue but it may have been related to our miscarriages.
How long did you wait to TTC between your miscarriages?
We were told from a medical perspective, there’s no need to wait, so we didn’t. This was under the advice of the Early Pregnancy Unit, which confirmed my miscarriages through an ultrasound.
I did, however, receive some unsolicited advice from other medical professionals.
It was 3am and I was telling a doctor how this was my third miscarriage and the pain was significantly worse than last time. He told me it was normal and said “maybe you should stop trying”. This wasn’t medical advice, it was his opinion. This was pretty hard to hear.
Pregnancy & Loss
How did your miscarriages start?
Our pregnancy test progression was slow and I’d eventually start bleeding. We’d then go to the hospital for a scan and be told there were no signs of life. This was particularly hard the first time because due to COVID-19, my husband wasn’t allowed into the room, even though we had a good idea of what to expect.
That said, with our 4th pregnancy I started bleeding just before 6 weeks and went for an emergency ultrasound, expecting to be told I’m having another miscarriage. To our surprise, the sonographer said “it’s all good news today, there’s a little baby with a heartbeat”. Turns out, I had a subchorionic hematoma.
A subchorionic hematoma or hemorrhage is bleeding under one of the membranes that surround the embryo inside the uterus. Small hematomas often go away on their own, as mine did! Subchorionic hematomas are increased in early pregnancy in women taking blood thinners (which I didn’t know, more on that later…).
Did you have all the classic pregnancy symptoms before your miscarriages?
Yes, I experienced mild symptoms. That said, all my previous pregnancies failed before 6 weeks gestation. With this pregnancy (currently going strong at almost 19 weeks), I didn’t begin to feel strong pregnancy symptoms until around this time anyway.
How long did your miscarriages last?
The first two lasted about a week and the third one lasted 10 days and was an incomplete miscarriage (when your body begins to have a miscarriage but everything isn’t passed).
The bleeding had stopped but I was still getting positive pregnancy tests so my doctor booked me in for another ultrasound a few days later to see what was going on and told me to prepare myself for the worst, but the night before the scan I passed the yolk sac and embryo into the toilet.
Whilst the first two were upsetting and disappointing, the third one was physically and mentally harder.
Did you have medical management for your miscarriages?
Thankfully, there was no medical management required for my miscarriages as they were all in the first trimester and completed naturally without complications.
What fertility clinic did you use?
We were under the care fertility clinic at our local hospital. Information on accessing NHS fertility services is available on the NHS website here.
Sadly, you have to wait until you go through the trauma of 3 miscarriages before you can get NHS support and fertility investigations. This needs to change, but that’s another story…
How long was the NHS process?
Before going down this route I considered private fertility testing and treatment because I had heard the NHS could take up to a year to see patients. But it wasn’t necessary to go private…
We were completely shocked with how quickly the NHS moved on our referral, testing, and prescribing treatment. This was all done in less than 1-month, so we only missed a single cycle.
Would you consider going private for fertility treatment?
Yes, this is something we looked into. Initially, we thought it would take too long to get seen by the NHS but they were very quick.
After all our testing, our consultant said we had a good prognosis and to keep trying naturally, but I may have more miscarriages. I jokingly said “When do we come back? After 9 miscarriages?”, and he replied, “Yes, if you have 6 more, then come back”. This was because we had a good prognosis for achieving a successful pregnancy naturally.
Mentally, I didn’t think I could go through another loss, so we looked into private but thankfully we’re now almost half-way with a healthy little baby.
I’m not eligible for IVF on the NHS, can you recommend any private clinics?
I can’t recommend a private clinic based on my experience, as we went through the NHS. I did, however, do a bunch of research on private clinics and had some private consultations.
Firstly, even if you aren’t eligible for IVF on the NHS, you’ll be able to get basic blood tests at your local GP surgery which will save you a ton of money. There are also lots of fertility-specific packages available online that you can purchase which is a cheap way to fast-track things.
In terms of taking it to the next steps with consultant-led prescriptions and IVF, we had a consultation with IVF London was super helpful and offered lots of affordable options. We also looked at local options in Exeter at Bristol that offered 50% and 100% money-back guarantees if you used your own eggs.
What testing did you have?
Throughout our journey, I had standard blood tests such as thyroid, iron levels, kidney function, liver function, and bone screen. Followed by fertility and miscarriage-specific ones, such as chlamydia testing, CPR inflammation, full hormone screen, blood-clotting screen, rubella status, b12 levels, prolactin, and b12 levels.
When my miscarriages were confirmed via ultrasound they didn’t find any problems with my womb, so they said that it likely wasn’t a structural issue. They said I could come in for another when I wasn’t pregnant to check again when there was no pregnancy tissue present.
Last but not least, I had two specialist blood tests specifically for recurrent miscarriages, for antiphospholipid (aPL) antibody and lupus anticoagulant testing. These aPL antibodies are known to increase the chance of blood clots and change the way the placenta attaches. These blood clots and changes can reduce the blood supply to the fetus, which can cause a miscarriage.
Our pregnancies were not far enough along to receive karyotyping (genetic abnormality screening), and parental karyotyping isn’t available on the NHS unless your baby has had a positive abnormality test result.
Did you get tested for Natural Killer Cells?
We exhausted all the free NHS testing and our next steps if this treatment didn’t work would have been to private tests for Natural Killer Cells, parental karyotyping, before PGT IVF.
Thankfully, I had a referral to see Dr. Siobhan Quenby, Professor of Obstetrics Division of Reproductive Health at Recurrent Miscarriage Clinic at Coventry and Warwickshire Hospital.
If you’re looking for Natural Killer Cell testing, from my research, this was the best option. Dr. Quenby is also the Deputy Director for Tommy’s, the National Centre for Miscarriage Research.
Did your partner ever get tested?
Yes, we had male factor testing but it was more to tick a box. It wasn’t genetic testing, and we knew I had no problem getting pregnant 😂
Did they find anything after your investigations?
Unfortunately, after over a dozen blood tests, multiple hospital appointments (on both sides), and ultrasounds, our fertility consultant couldn’t find the cause for our miscarriages.
We were warned this would be likely, as recurrent miscarriage is usually unexplained, but we chose to go ahead anyway and try to get some answer. We had to abstain from trying during this period.
Do you know the causes of your miscarriages?
Our diagnosis is ‘unexplained’ with a good prognosis, which is a difficult pill to swallow. 1 in 4 people will experience a miscarriage but only 1% of people experience 3 or more losses, so it’s natural to want answers.
Our fertility consultant spoke to us about how I may have something called hyper-fertility, which there isn’t much research on but they’re hoping there will be in the next 5 years. Essentially, 1 in 9 eggs are good quality and the rest are not. Most people’s bodies will reject abnormal eggs, but for a small percentage of people, their bodies will implant any quality egg…
Eventually, the embryo won’t develop properly and the body will naturally abort it. My husband likes to describe it as I’ve got a terrible bodyguard working on the door, but a great security supervisor that goes around kicking out all the bad eggs that managed to sneak in… This wasn’t our official diagnosis but it was one of the potential reasons behind our losses.
The second potential reason behind our losses was a blood clotting issue. My blood clot screening came back normal, however, the blood results can be inconclusive so treatment was prescribed anyway. There were other factors that pointed towards blood clotting issues and it’s the number 1 reason for RPL.
Did you have fertility treatment?
I was on prescription-strength folic acid to reduce the chances of developmental problems, as well as taking daily blood thinners up to 36 weeks to combat potential blood clotting issues. It worked on the first cycle but we don’t know if it was an abnormality or blood clotting issue.
Did you get prescribed/buy progesterone treatment?
Our fertility consultant refused to prescribe us progesterone, despite it coming up as an option from a nurse. At the time I was pretty distraught about it, and stupidly, purchased it myself online.
I didn’t end up using it and returned it immediately.
Our fertility consultant’s reasoning was that my body wasn’t producing progesterone because the pregnancy wasn’t viable. Taking progesterone would have only masked the inevitable miscarriage.
Did you have IVF?
We considered PGT (preimplantation genetic testing) IVF or ICSI but we would need to go private for that because we had a good prognosis for a successful spontaneous pregnancy.
PGT involves checking embryos created by IVF or ICSI for chromosomal abnormalities. Only embryos without chromosomal abnormalities are fertilized and placed back in the womb.
Did you find counselling useful?
Following our third miscarriage, I started seeing a counsellor. She shared some helpful coping strategies but I found some of the things she said quite shocking and insensitive, so ultimately stopped seeing her.
I found different ways to deal with what was happening and leaned on my friends and family for support, after opening up about what was happening after the third loss. Miscarriage is a lonely journey, so I recommend speaking to someone, professional or not.
My friend has a miscarriage and I had no idea how to support her, any advice?
I could, and I will write an entire blog post on this. After my miscarriages, especially the third one, I became hypersensitive to everything people said to me. I knew they were only trying to help but nothing they said seemed to make me feel better, it actually made me feel worse.
In particular, I found it difficult when people told me a story about “a friend that had 5 miscarriages but now she has a healthy child”. Does that mean I have another 2 traumatic losses to go? I’m not even thinking about another pregnancy right now, I’m grieving this one.
Don’t offer advice, don’t probe with questions, and don’t try and look on the bright side of things. Saying things like “at least you can get pregnant”, really doesn’t help. Just hold space, listen, and agree with them that it’s a shit situation and no one should have to go through it.
How do I tell my friend that had a miscarriage that I’m pregnant?
Tell them your news over a text message. Most of the time you’d think important news should be shared in person, but please don’t do this.
Give your friend the space to digest the news in their own space. Try and time the text message so you know when they’ll be at home and be able to process it. They’ll likely be upset, and there’s nothing worse than trying to pretend you’re happy for someone but really you just want to cry.
Don’t tell them in a large group of people. Offer them space and time. Accept they might find it difficult.
Pregnancy after loss
Are you having extra monitoring throughout your pregnancy?
Yes. We had ultrasounds at 6 weeks, 8 weeks, and 10 weeks. Usually, you wouldn’t be able to get a scan on the NHS until you’re at least 12 weeks. These reassurance scans meant we could see our baby’s heartbeat and watch our baby grow, which really helped. My midwife said I can always come up whenever to listen to the heartbeat, too.
Are you now classed as a high-risk pregnancy?
Recurrent miscarriages and our treatment doesn’t automatically make us a high-risk pregnancy, although I’ll likely be classed as high-risk to other factors, which may (or may not) be related to the RPL.
During the first trimester, I was at a higher risk of having a miscarriage (43% chance of miscarriage) than other people (25% chance of miscarriage), because of my previous losses.
When did you stop worrying and feel confident with this pregnancy?
I haven’t stopped worrying and I don’t feel confident. I’ve been pregnant 4 times and I haven’t had a successful pregnancy (yet), so we didn’t really get that excitement of seeing two positive lines on a pregnancy test.
Each week that passes I feel a little bit better but I still worry.