I haven’t posted in a while as the first few weeks of being Teds mummy were such a whirlwind followed by a shit storm of colic, tongue tie & sleep deprivation to put it quite frankly… but I think I finally see the light! No one warns you about these things though, and so many women who suffered a loss feel like they have to only be positive and thankful about their rainbow because they wanted them so much. It’s ok though I’ve realised to admit it’s blooming hard, even if I wanted him more than anyone will ever imagine I can still be honest and say it’s not easy and in my eyes that’s ok we are allowed that! So I’m back to my fertility queen ways which involves researching, reading, connecting & writing the only difference now is I have a little side kick glued to my chest.
My plans to raise awareness of rpl and early pregnancy loss seem to be going from strength to strength and even though I had my rainbow I’m still just as passionate when talking about miscarriage and I guess I’m trying to keep the momentum going. Like I’ve said before I know I can’t change the world but if I can make a difference to even one women’s journey then it’s worth talking about.
They say if a woman was willing to just keep trying even if that meant 18 miscarriages maybe they would get a good roll of the dice one time, but how much can we take, physically & mentally before we become broken. This is why I need to be passionate about the care and support that we do receive within the limitations that we currently face when it comes to our nhs and recurrent miscarriage.
I’m becoming increasingly more aware that it’s unlikely that the treatment I had will become a mainstream investigation or treatment that is prescribed within the nhs rpl clinics, mainly because if more clinical trials were done that resulted in more evidence, then it would become unethical to test women and not allow them a treatment that could help them. It’s unaffordable to the nhs in this current economy and with our political status.
Something else that I must communicate with you is that I received excellent care throughout my pregnancy and was treated by amazing nurses, sonographers, midwifes and consultants and I can’t praise our nhs enough. I have many reasons that I wanted to start fundraising for my local early pregnancy unit, one of the main ones was to be able to give a little something that could be used as a source of comfort for ladies finding themselves going through a loss of their own, something that the epau can hand out when you find yourself in that awful situation.
Another reason is because a lot of the charities and campaigns that do take place for raising awareness focus on later losses and are provided to maternity services but I wanted to bring some focus to the early pregnancy unit and to the fact that once you get that second line on a pregnancy test you think that your going to have a baby, that baby has an identity and a life that you plan out in your mind within seconds, minutes, hours. Even though my treatment was through private healthcare I needed our nhs and the early pregnancy unit in so many ways and I want to continue to be involved in making what is an awful time the best that it can be.
It’s now two years since this journey began and when I reflect back on it, I find comfort and a sense of relief mostly because of the amazing strong women that have come into my life and that’s what drives me to keep on going and to push this even further. I had so many readers ask me what happened to ‘those women’ ‘the ones you met in London’ well I’m going to refer to us as (9) nine women that came together and held each other up, we still do every day.
With their permission I decided to write about them and to tell you their stories too, because I think it gives even more breadth to show you how all of our situations differ, our diagnosis is the same yet different in some cases, our treatment ranges widely and yet we go through it together because we are a small community in a plethora of women just all wanting one thing, a rainbow 🌈 maybe someone might read this and think that’s me! I have that! If so then we have succeeded at something I think.
I hope this can show reality too, we don’t all have the rainbow yet and some are still on that journey riding the storm day in day out, tracking their cycle, peeing on sticks and doing the crazy stuff we find ourselves doing, but one thing that is for sure is I am still on that journey with them, checking in every day, squinting at those sticks they pee on, cheerleading during baby dance week and crying when things go wrong, holding hands from a distance when they enter every appointment and debriefing in the early hours so that they don’t feel alone.
One thing we do have in common is that we are all patients of the same doctor as we all got to a point in our journey where we believed immunology was the potential cause of our recurrent losses and so did turn to private testing. The rpl community is actually ginormous it’s scary when you see how many women are in the forums, I speak to many women who also haven’t gone down the immunology route, women with progesterone issues, endometriosis, thyroid problems and of course infertility and who struggle to conceive. It’s like a minefield trying to find one issue in a whole host of contributing factors that could be the reason for your recurrent losses.
ONE – I started talking to one in October 2017, the night I posted my very first blog entry on social media. A fellow Hullian able to connect with my blog post as she found herself in the same position desperate for help and confused as to why it kept happening. One had two miscarriages before we started speaking, the first in Sept 2016 & the second July 2017 both around 6 weeks gestation. Unable to access nhs help at this point because she hadn’t had a third loss she had already looked into other options and was considering the doctor that I had already booked in with and was awaiting my first consult. The following month she conceived her third pregnancy which sadly ended the same way at 5 weeks, she messaged me whilst I was stood in a sandwich shop to say it was over and I remember bursting into tears and leaving without a sandwich.
Our losses were all very similar in terms of gestation and the way the miscarriages happened, both me and one were lucky in some aspects that we were able to pass our miscarriages naturally as awful and painful as it was, we managed to escape needing surgery. After the 3rd loss she travelled to London and had the same testing as myself, her results flagged up high tsh level of 3.6. Something quite controversial as discussed in an earlier blog, the normal range for tsh in the nhs is under 5.5, however many fertility consultants like tsh to be under 2.5 when trying to conceive and in pregnancy. She had long cycles with late ovulation and the higher tsh was put down as a contributing factor to that, she had queried her high tsh previously with her gp to be told it wasn’t an issue. I was also treated for having high tsh of 3.4, we were both put on thyroxine and our tsh was within optimal range within 6 weeks of medicating. One believes that the high tsh was the cause of her losses, she did take an anti malaria drug that I was also on hydroxychloroquine (planquenil for US readers) and is used as an immune suppressant, she did not have a high number of nk cells but had a borderline level of activated cells (this means how aggressive the nk cells are towards the pregnancy). So as a precaution she took the immune suppressant until 16 weeks gestation.
Her pregnancy was fairly straight forward other than gestational diabetes and her rainbow baby was born at gestation 38+2, a gorgeous baby boy. The day I got my positive test with Ted I drove around to her house and we held it up against the window squinting together, 8 days later she got her positive and then we held each other’s hand every day praying these would be our rainbows, we watched our bumps grow together and now our boys have a real bromance that I hope will last a lifetime.
TWO- on the 27th October 2017 I first made contact with TWO via a recurrent miscarriage platform, we had both published posts asking questions about the same doctor and then we started to message privately. Twos journey had been much longer and more painful than mine in my eyes, she began her mission to become a mummy in the summer of 2014 and very sadly had 5 losses in total, 3 of which were missed miscarriages after seeing a heart beat.
For me I was always chasing a heartbeat and seeing one meant major progress past all of my losses but for two a heartbeat didn’t mean it was going to turn out ok, and that is heartbreaking. Two had a lot of experience of different testing under different consultants and before loss number 5 she had a diagnosis of very high killer cells that she thought was the answer, but unfortunately the treatment method of her consultant at the time still did not save her baby. That consultant treats nk cells from a positive pregnancy with steroids but for many that is too late and our consultant that led us to these rainbow babies treats from ovulation and believes that nk cells can already do major damage by the time you get a positive test. In November 2017 she had an nhs appointment with ‘the king’ she had waited months for, its not very well known but you can ask to be referred to see him on the nhs from anywhere in the UK but you just need to be prepared for a very long wait and then an even longer wait for your results.
After realising the length of the wait for the results she decided to see him privately as his nhs treatment also has a more limited range of tests and treatment methods. As before she was found to have very high natural killer cells, previously having had steroid treatment and still losing the babies. With our consultant he does a test that puts your cells in a pregnant like state and then tests different drugs on them, her results showed that the steroids did not suppress her killer cells enough to enable a successful pregnancy, therefore if she was to have stayed with the previous consultant she would still be losing now. It was the intralipid infusions that had the most success at lowering her nk cells and so was treated with these alongside the anti malaria drug hydroxychloroquine. Due to her husbands sperm dna fragmentation test showing a high level of damage she was advised that he would also need vitamin treatment too (fertility max) for three months before they could resume trying to conceive.
We talked every day through that period of waiting to conceive, that is also a time of stress and anxiety of women, it’s so painful knowing that you are ovulating but not trying to catch that egg. We counted down the weeks and days together until she could try again. I went through my 4th loss during that time and she provided me with comfort and reassurance when I lost all belief that this doctor would give me my rainbow.
I woke one morning to go for a wee at 4am and saw I had a message from her so I opened it and there was the positive test she had been waiting for. I was so excited and happy for her I couldn’t go back to sleep I was wide awake! The early weeks brought so much anxiety as she waited until 8 weeks for the first scan as a 6 week heart beat didn’t mean good news to her ever before. Two was the one I sat waiting for in the intralipid room that day, that day gave her hope and strength to get through the coming weeks whilst battling horrendous sickness. Her gorgeous baby boy was born at 36+6 gestation on the 6th of January, another rainbow boy in our lives, we are yet to meet with our boys but still guide each other through motherhood daily.
3,4,5,6,7,8 will follow in part 2 & 3 but for now I’ll leave you with this..
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