Imagine some inspirational bullshit quote about life giving you lemons if you want…
Trigger/content warnings
So I suppose I need to post some trigger and content warnings about this one. In this installment I am going to be talking about the last couple of years and those include babyloss; Termination for medical reasons, miscarriages and a missed miscarriage, and procedures associated with those.
This is not a pity piece, I have found solace in other people’s stories, comforts in a ‘community’ that I never knew existed. I hope that maybe someone might find something of use in our journey. I have tried to remain factual, our emotions, well if you’ve been through any of this you’ll know, if you’ve not I’m not sure I can ever put into words so that you would understand, not that I’m trying to be unkind, it is what it is.
I will give details of places that have helped us at the end, as well as some social media accounts I wouldn’t be without, plus some books, podcasts… Anything really that has got me though the darkness.
The sunshine before the storm…
We have a five year old. We’ve made no secret of the fact she was a complete surprise. I had an IUD in situ, I was recovering from fairly major stomach surgery only 12 weeks prior. So the fatigue, nausea, and vomiting was not obviously pregnancy… she was a reasonably uncomplicated event… and she has blessed us every day since.
(by the way when commiserating about babyloss never say “at least you have one….” In fact NEVER start any sentence with “at least…”)
We had planned to add to our family starting 2017, however my gallbladder broke, I needed surgery, and recovery time. So we ended up starting this chapter of our lives in 2019.
Nina Isabella… One.
Firstly it took us a little while to catch, mainly because after basically my whole life being told that women ovulte mid cycle, day 14…we dont. Once I started tracking it was clear like clockwork ovulation was day 20-22, more on this later as it should have been a flag to my doctors…
Every month I prayed to whatever gods were listening for her, when she appeared with those little blue lines I prayed every day to any listening gods that she was healthy. I could feel her little flutters (from nine weeks) and felt every symptom for weeks.
On the 4th November on seeing her little form, fingers, flickering heartbeat, hearing that sound of life, we were to discover she was not meant for this world. She had a severe cystic hygroma, an indication of genetic abnormality and unlikely to make it to full term, in fact very likely to miscarry but with no indication when. We made the best worst decision and we lost her on the 7th November 2019. It would have been our 13th week. It’s called a Termination for medical reasons, and is totally different to a spontaneous miscarriage. I had a hemorrhage due to retained membrane or ‘products’ as they call it and needed to stay in the hospital for the night. We were later to discover that she was affected by Noonan syndrome, neither of us are carriers so it was a very unlucky generic mishap which occurred for the very first time with her. With only a 1% likelihood of reoccurence. Yes, we found out she was a baby girl and we named her, we had a small service and cremation for her on 9th of December 2019. I am very grateful we got that opportunity.
Because she was a TFMR, we were referred for genetic karyotyping, blood tests and we had a post mortem and had her genetics tested which gave us the answerers already mentioned.
There was also counseling with Petals, an amazing charity (more details later). Doctors, consultants etc. Just unlucky they all assured us, “try again” they said.
Two..
Then in spring those two lines appeared again, cautiously optimistic I booked in with the midwife, but before we got to our first appointment it was all over. In the midst of a global pandemic. There was pain, excruciating physical pain, I knew something wasn’t right so I called 111 and was advised to go to A&E, alone, and as we couldn’t get anyone to watch our daughter, my partner had to stay at home with her while I drove myself the half an hour to a & e. I was seen quickly, and booked in for a scan the next day. By that time our baby was gone. Blood tests and two more visits to the early pregnancy unit alone confirmed our loss. ‘Always look on the bright side of life’ comes on the radio on my way home from the hospital…the irony isn’t lost on me…
That was April, the month of my 40th birthday, we didn’t do much celebrating, and I was actually grateful for the pandemic so I didn’t have to see anyone.
Three.
Those two lines appeared again a few months later and we thought surely this time, we can’t be that unlucky can we? Is life really that unfair? This has to be the one…
Sadly the bleeding started at about the same stage of our pregnancy, I called the early pregnancy unit for a scan but miscarried the day before the scan. The same scans as before confirmed our third loss in less than 12 months and my second alone because of the pandemic. That was August just as our daughter started school.
We were then referred to the recurrent miscarriage team, we wouldn’t get a telephone call from them until January. Given our age and the likelihood of suffering another loss in 5 months I arranged for a private consultation. All our tests have come back normal, ALL of them…
It was advised that next time we fell pregnant to take a number of preventative measures, namely progesterone, steroids and blood thinners.
Four.
We thought we’d give it a break, try to recover physically and mentally, but shortly afterwards those telltale lines appeared unexpectedly this time. I diligently did as advised, we made all the appointments, pleased to pass the point where we lost our last two pregnancies. The doctor pushed for an early scan at 6 weeks but it took two weeks to get seen and at 8-9 (ish) weeks I made the familiar journey, on my own to the early pregnancy unit. Feeling fully pregnant, as I had for a number of weeks.
In that same room where the last two miscarriages were confirmed, alone, in that familiar vulnerable position. I hear the words “I’m sorry it’s not good news….” I felt like I’d been punched in the chest. This time I had to call my partner and give him news we weren’t expecting …
This time we’d had a missed miscarriage, unknown at what point in the last 2 months. The gestational sac completely empty. Again I was ushered into the side room, the one where they discuss the death of your babies.
The young girl, tells me she’s sorry and I need to come back for another scan, a second opinion “in case” I have my dates wrong – I don’t, I wanted to punch her. I had to wait 10 days. I think at least the baby is already gone, I’m not carrying a dead baby. But I still feel pregnant, I’m sick, I’m exhausted, I’m sore. I still have to pass the ‘products of conception’ … I ask her should I cease my medication, she tells me it’s my decision.
The second scan confirms the diagnosis and that the pregnancy ended in the 6th week, about the same time as the previous two. A week later I’m booked in at the hospital for a manual vacuum aspiration (MVA), the single most painful procedure I’ve had to endure but over so quickly. All alone. They sent what they remove to be tested, I suspect that the progesterone masked the miscarriage. This was December. Our second Christmas grieving a loss.
What they don’t tell you is that HCG; the pregnancy hormone, and other hormones remain active in your system for days and sometimes weeks after the pregnancy has ended, you can still get positive pregnancy tests for maybe 3-4 weeks (longer if there are problems), I still felt fully pregnant, in every way. Thankfully the hospital gave me anti sickness meds and I think I will forever remember the cheese and crackers and cup of tea that was brought to me after my MVA.
So, what’s the deal?
We’re 41 next birthdays, both non-smokers, both not really drinkers, reasonably healthy, yes I’m overweight, but 4 baby losses and a global pandemic have that effect, I have gained half a stone with each loss. People in larger bodies have many successful pregnancies.
I ovulate like clockwork… I was totally convinced after our first loss that it was egg quality, but having had the results from the last loss show no genetic abnormalities I’m not sure now. I have done a lot of reading. As you can imagine Dr Google has been a friend and a foe. I will list some of the books that I have read and the resources I have used at the end.
I said earlier having a a long cycle and ovulating around day 22 each time hasn’t until now flagged up that there might be a luteal phase problem, the luteal phase being the time between ovulation and your menstrual period. This phase ideally should be maybe 12 to 14 days to enable the lining of the uterus to thicken sufficiently to maintain a pregnancy. Short luteal phases are linked to early pregnancy loss but it’s taken us 3 losses to discover this and not once has it been mentioned by medical professional! My luteal phase is 10 days. The treatment apparently is progesterone from 3 days after ovulation a treatment which the NHS will not support because it’s not evidence based although it can do no harm. The NHS will support progesterone from a positive pregnancy test however we did this last time and still miscarried.
My doctor although sympathetic can do no more, the recurrent miscarriage team at the hospital can do no more, the fetal medicine department to which we have been referred can do nothing until we’ve had a successful first scan. I’ve been asked to be referred to the Tommy’s clinic which it’s the time of writing this is closed due to the pandemic and once reopens has a minimum 6-month waiting list. Which would not be a problem if we were 10 years younger. Our other option is to go private which has a high cost involved. We have to weigh up the desire to extend our family against the ability to afford it.
Lack of ability to access care has led me on many occasion to want to scream into the void in sheer frustration, not being able to access any help it seems from anywhere is just mind-boggling. It feels really barbaric to leave us trying again and again and again resulting in more more losses but that’s basically where we are.
As a direct result of this I am now fully medicated for my mental health again the anxiety and depression got too much to bear, no stigma, no judgement, no guilt, it is what it is and I know the brighter times are ahead some of us just need a bit of chemical help.
What people don’t realise with baby loss is the triggers for the grief are endless; it doesn’t end when the physical symptoms do. Literally every memory and milestone of the last two years is attached to pregnancy and miscarriage; birthdays, Christmas, concerts, anniversaries, mother’s day, father’s day, our daughter starting school, our last family holiday. Then there are the anniversaries; due dates, miscarriage dates, procedure dates. Other family babies arriving, pregnancy announcements, the comments, questions… Each like a punch to the gut and triggering such ugly feelings. Which of course are completely normal.
I’ve left out the gory details, I’ve left out the emotional trauma, these things that we’ve lived through and so far survived are best left unsaid for now, I’m not ashamed to speak of them but this is not the time or the place, I’m not sure but they would really help you; if you’re experiencing them yourself you know what I’m talking about and you have my love and empathy, if you haven’t then it’s not for me to tell you and I hope you never endure any of this.
If you want to ask me questions I will answer them truthfully.
So as time runs out we haven’t given up I feel reasonably positive that will get our rainbow baby. But how many more times can I put my mind and body through this trauma? The ‘babyloss community’ have been vital to me during these times an when I have felt the need to step away I have been able to do so. Counselling with Petals has got me through the worst times and I would recommend seeking them out if you are struggling following a babyloss.
Resources
Social Media – many have different channels but I have linked only to instagram or facebook here.
Books
Charities and Medical
momma of childerbeast 