It’s been a while since I posted part one, I always say to myself I must write today and then all of a sudden that day has gone! Somehow 6 months have passed since Ted arrived and I’m unsure where that went too.
Even though I’ve had my rainbow I’m still very active in the rpl community and most days have a handful of people to reply to via my blog or social media, it’s really great that now I have a link with my local epau and I’m working with them that I also have a lot of local ladies getting in touch. I am in the process of trying to set up a monthly recurrent loss support group and I know that my bracelets are bringing comfort to so many ladies, as many contact me to thank me, not something I expect at all but it’s nice to hear from them.
Just lately there’s been quite a bit of controversy in the online rpl forums around ‘how many’ miscarriages a lady should have had before she can reach out in those groups, and as admin and creator now on a few groups it’s something I have had to reflect on myself. I think for me it’s difficult because no one wants to turn away a lady that has suffered one loss and is desperate to find help and reassurance that it will work out ok next time, however I do think that ladies that have had one/two losses don’t need to have the living day lights frightened out of them in an rpl forum, when it is highly likely that all will be ok and it will work out next time.
It’s going back to that leap from 1 in 4 to then leaping into the 1 in 100 statistics. Sometimes as much as you want to, there really is no need to worry yourself looking into testing and what could be the cause too early, I myself didn’t step foot into the rpl world until my 3rd pregnancy when I knew it was going to end the same way.
It’s hard because some ladies that have had 9 losses find it hard to be able to relate to a lady who has joined the forum after one loss, it’s something that is really difficult to manage in the right way with sensitivity to all. However that said I think ladies that have had fewer losses feel they need that support because it’s so often said to them by medical staff that it’s completely normal, there’s no reason, just keep trying… and the thought of it happening again is too much if you have been through a traumatic loss.
So I continue to try find a way to provide support to everyone, but this did help me decide that my local support group would be for recurrent miscarriage patients and that the two ‘categories’ if you want to label them, should be kept separate, mainly because the topic of conversation does encapsulate a lot that does not need to be considered before having 3 losses, also because that is the protocol of the nhs and there’s no point in ladies seeking out that info to then be further disappointed and heartbroken that they can’t yet be referred if given any help, not that I believe that is right as you know I don’t.
Anyone who knows me and has spoken to me knows that I have empathy for any kind of loss regardless of how many, how late or the kind of loss suffered, everyone has the right to need support and to want to talk. I am also in contact with a wonderful lady that has sadly suffered an ectopic loss and is wanting to raise awareness and look at support that can be provided and so we have been discussing the appropriate route, and after support that could and does very much need to be implemented for ladies that have suffered less than 3 losses.
I’ve also been reflecting on my birth just lately due to their being so many ‘positive birthing’ articles bouncing around due to the new royal arrival. I’ve been doing some research into placenta health and if there is any relation between the drugs that I had to take to achieve my pregnancy and the end of my pregnancy resulting in placental failure and Ted stopping growing as a result of that. I haven’t yet decided the outcome of that so I’ll let you know once I have!
I think there’s so much pressure on women to have a positive birth experience and bounce back like a princess when unfortunately that option is taken out of many women’s hands, if they have suffered a complex pregnancy that has resulted in an emergency delivery of their baby then they unfortunately have that option taken away from them.
For me that doesn’t make the arrival of their baby any less positive, I was just thankful to have him here and safe and even though, no it was no dream arrival, I didn’t even make it to my own baby shower, none of that mattered. You should be proud of what you have achieved how ever your baby arrived, whether you laboured or had a c section, whether you went to term or had a tiny preemie, if you had no pain relief or took it all and was half cut, your body has done something amazing and every woman should be proud.
Things have been moving very fast with my rainbow chasers this year and I can’t believe it’s already May, like always we have laughed, cried and are holding on to hope of tiny rainbows, it’s a bit like university being a rainbow chaser we have some graduates, and some ‘students’ in the depth of it all but with the support of one another hopefully one day we will have a huge graduation party!
THREE- 8th Of January 2018 number three landed in my inbox, this was back when I had my diagnosis and had tried one month on the treatment plan with no luck. Three was also under the same consultant and trying to get to grips with the treatment plan. In August 2016 she had a chemical pregnancy, this is defined by a positive pregnancy test that soon turns back negative usually within a week of your period due date if uncomplicated.
A chemical pregnancy means that an embryo reached the pre implantation phase of development and the hcg hormone began to be released but the development stopped soon after hence causing a positive pregnancy test, most women wouldn’t know they had, had a chemical pregnancy test if they didnt use highly sensitive pregnancy tests.
This is why you do find a lot of GP’s dismiss chemical pregnancies because they will do a blood test that will either come back negative (hcg under 5) or inconclusive (hcg between 5 and 29) they only class it as a positive if the reading is over 30. So doctors tend to try to encourage women to not take early pregnancy tests, but for women with rpl that isn’t so easy and also especially if you end up on an aggressive treatment plan like I did, you need to know immediately as soon as you can so that you can take the correct drugs.
I digress! Back to Three, the chemical pregnancy in 2016 was a bit of a surprise and she wasn’t consciously trying for a baby however it did make her realise that she would really like to have a family. She decided straight away to have some fertility tests to check as she was worried about her age already being 39, even though there is so many people having babies over 40 nowadays it’s understandable that it’s a worry as your egg reserve significantly decreases once your over 35 (supposedly). The tests showed up severe endometriosis in the form of a large ovarian cyst that requires surgery but the cyst also came with the guarantee that the tissue would definitely grow back, with endo and trying to conceive you are basically working against the clock like a ticking time bomb until you need further surgery to remove the regrowth of the endo.
2017 brought a further three early losses all before or around the 5 week mark and after a recurrent miscarriage clinic referral she was told after the standard panel of nhs testing coming back all clear, that there was nothing that could be done unless she made it far enough for them to be able to test the ‘product of conception’ I hate that term I really do, a clinical term for your baby!
It was at this point that she turned to the private clinic in London in December 2017 at the same time as I did. Her results showed a high amount of natural killer cells (same as me) and also that the endo had grown back and that she would require further surgery before trying to conceive. She conceived in April 2018 not long after I had conceived Ted we were only a few weeks apart. We checked in daily analysing pink lines and hcg numbers and everything was soaring high for her and so so positive. For the first time ever she made it to the 6 week scan which showed an empty sac that didn’t add up with the very high hcg numbers, after a few weeks of painful waiting and scans the pregnancy was diagnosed as a partial molar pregnancy.
A molar or partial molar is an abnormal pregnancy in which an embryo either develops incompletely or doesn’t develop at all. Instead a cluster of cysts develop which can grow aggressively and require up to 6 months treatment sometimes resulting in a course of chemotherapy in the worst cases, symptoms of a molar pregnancy are very extreme sickness and bloating in early pregnancy.
Luckily for Three even though the pregnancy did take a few months to resolve, the pregnancy was able to be fully removed with no long lasting effect or need for chemotherapy treatment. Sadly though she has since not managed to conceive since and so hasn’t had a real shot at seeing if the treatment would work for her, as nothing could have saved the molar pregnancy with it being a chromosomal issue.
I do read a lot of women on forums saying I tried this and that and it never worked, but I think lots of women don’t realise that no treatment protocol of any kind is going to save a non viable pregnancy that has a chromosome issue, you would need a healthy embryo to implant in the first place for treatment to help the pregnancy continue successfully.
Three is having a little time out of trying to conceive and considering her options she is speeding towards 42 as she says but I strongly believe she has the drive and determination to get her rainbow baby and she really does deserve that. She has great knowledge of rpl and is always selflessly offering her help to other women and I know that must be hard when you want something so badly for yourself. She’s a strong woman and has fight left in her yet…. yes you do… if your reading this 💗
FOUR – Is one of the four of us who has finally got her rainbow baby and out of all of us, is the only one who got a pink one! So she has three very eligible bachelors to choose from when she’s older! Fours precious rainbow girl was born just two days after Ted, we were 4 weeks apart throughout our pregnancies but then with Teds emergency arrival he beat her to it and she swiftly followed two days later which was truly special and we can’t wait for them to meet. Four had her first miscarriage in May 2016 at 7+1 and I guess like anyone, even though it is awful as you are so excited and I definitely had blinkers on and no idea that anything would go wrong, you just write your first loss off as bad luck, your told it’s so very common and I was definitely left feeling like next time would just be fine.
After the miscarriage her cycles and periods all went haywire and after some investigation she was diagnosed with PCOS (polycystic ovary syndrome). Some ladies can struggle to conceive quickly with pcos as sometimes you don’t ovulate every cycle and it can become difficult to track ovulation and know when you are fertile too. Four did manage to conceive naturally in February 2017 and due to being anxious after the first loss went for two early private scans in her 2nd pregnancy at 6 & 8 weeks and saw a heart beat at both of them.
She went for a third scan at 11 weeks to be told there was no heart beat and that baby had passed at 8+2 just a couple of days after her previous scan. After 9 days of waiting to see if the miscarriage would start naturally she decided to opt for surgical removal as the waiting is so distressing. After the miscarriage at a gp appointment she found out her white blood cell count had come back high from her booking in midwife blood tests, she was convinced her body has been fighting something and due to anxiety about becoming pregnant again decided to look into immunology and pregnancy and went to see the consultant privately.
She was diagnosed with highly activated nk cells and put on the complex plan same as me of steroids and intralipids and progesterone. After 2 months on the steroids she had a bad reaction to them with a very abnormally high heart rate and the consultant decided she could no longer take them and put her on to the hydroxychloroquine program instead. Due to the pcos and struggling to know if she was ovulating and when she decided to try the doctors super ovulation program.
This involves involves taking a drug at the beginning of your cycle to encourage more eggs to ripen and then a follicle scan before ovulation to see how many eggs have responded to the drug, you are then given an injection to force ovulation of the eggs and this gives you a higher chance of conceiving as you usually release 2-4 eggs, also a higher chance of multiples too!
At the follicle scan there was only one egg that had ripened and so the treatment hasn’t worked this time, usually the dosage would then be upped over following months until you get a response from the ovaries. She still had the timed ovulation jab just to take advantage really of knowing the exact day of ovulation practically down to the hour. Even though there was disappointment that the super ov program hadn’t worked, that soon was forgotten about as she did conceive her baby girl with that one lucky eggy that was sat waiting.
Like myself the end of her pregnancy was very worrying as her baby girl also dropped majorly low on the centile and on growth scans was showing little growth towards the end. She was born full term and healthy and is a little beauty, more hope for those still trying.
I’ll finish with expressing my extreme happiness to read the Tommy’s publication in the news this week regarding pregnancy and recurrent miscarriage. After the promise trial I really believed that we would never be able to access the use of progesterone via the nhs again, due to every doctor just quoting the promise trial at you if you even dare to mention it. However the prism trial has now shown evidence that progesterone had a positive effect on recurrent loss patients with spotting in early pregnancy.
If you think that progesterone could help you and you have previously been told no… there is now a printable document on the Tommy’s website that summaries the prism trial findings and you can take this to your GP if you have suffered 3 or more losses and are classed as an rpl patient.
I can’t tell you how strongly I believe that those tiny progesterone pessaries can save a pregnancy, so stand up and be heard.
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