Baby loss awareness week 2019 has been and gone, once again I was overwhelmed by the wave of light, there’s just something about it that really gets me and I guess it’s the realisation of how many losses there are, everywhere, every week, every day. I hosted my Soirée on Saturday and it was truly amazing to feel supported by so many people and to know that so many people care about my mission.
My mission to raise awareness and understanding in the subject of fertility, pregnancy loss and recurrent miscarriage. To provide support to women trying to conceive after recurrent losses and to be an advocate to encourage women to be strong enough to use knowledge as power.
Sometimes I find I have to scroll past posts on my forums because I find them so frustrating. It’s usually a lady posting that they have been given a treatment plan to try from a doctor and then that they tweaked it themselves and didn’t quite follow the plan how they were told but then when it doesn’t work out they are quick to blame the doctor. It’s like being given antibiotics and choosing not to take them but then going back to the doctors to say you still have the infection, some people just can’t be helped but then seek help constantly. When I went to see my consultant who got me my rainbow my treatment plan could have said I had to do absolutely anything and I would have done it, because I was so desperate for a baby but also because I had so much respect for him and his practice.
So you have people who are choosing to not follow treatment plans, that are proven that they work and then you have women that have no treatment plan and that are willing to try absolutely anything even if it’s not based on medical advice or research, because they have come to the end of the line with testing that they can access and have no answers, they are absolutely terrified of a loss and of trying again having not changed anything. So many women struggling with their mental health and in a state of distress that could be helped if more testing was available to them.
Running my support group has really opened my eyes to how many women are not entitled to help and investigations because they already have a child yet so many women suffer with secondary infertility or recurrent miscarriages after having a straight forward text book pregnancy the first time around. Two years ago I probably would have said that it’s not the same for those people because they already have a child but now after running the group I have a completely different outlook on that. Hearing women say they have been told ‘at least you have one’ and seeing the heartbreak in their eyes, I completely get it now. Why should they feel lucky to just have the one child and be made to feel guilty that they so badly want a sibling.
The outlook is kind of well you have managed it before so there can’t be anything wrong, that’s completely wrong, a woman’s body can change hormones wise in the space of a month this can affect her fertility, her egg reserve can change as time passes, her bodies immune system can become more aggressive, anatomically she may have fibroids or cysts affecting her fertility. There could be plenty of things wrong and so getting help to have further investigations really should not be more difficult because they already have a baby. Anyone reading this that is in that position, you need to be your own advocate and ask to have your hormones checked and your egg reserve your GP can do these tests for you.
I have gathered so many thoughts and information from the first 5 months of my support group, lots to feedback to the hospital and I can see the positive affect it is having on the rpl community locally and I feel a sense of peace now. I was so angry when I was in that place that there was nowhere to turn and now I sit in that room and I look around and listen. I feel convinced that this is what these women need to make them strong enough to fight, to fight for their baby that they deserve, I’m happy to be front row of the battle with them and to hold them up when the going gets tough.
My next wonderful lady to write about was Six, when I asked her to write me something she was so passionate about telling her story just like she has been on this journey, I didn’t want to re write it myself because it’s just perfect and so in a blog take over I’m passing you over to Six to tell her own story. I’ve held her hand online through some tough times and now I hold your hand whilst you tell your story, you are an inspiration and I hope your story can give those women that feel lost and defeated going through secondary infertility hope and faith to never give up.
SIX – I came across the CFQ blog in mid-2018 when I had begun asking for advice on various fertility and miscarriage online networks and had learnt about immune issues being a possible cause of miscarriage. The same clinic and doctor kept coming up and a bit of googling led me to Samantha’s blog. From here, I messaged her for more information. I explained how isolated I was feeling, and she added me to our amazing Facebook Messenger group full of fellow patients who are undergoing or have had success with the same treatment. The group has been essential to my survival and tenacity to keep going if I’m honest. I’m not sure I’d have carried on with the treatment or been anywhere near as confident in it, if these women hadn’t made me believe it could actually work for me. Here’s my story.
We had our daughter in 2013. She was conceived fairly quickly, and the pregnancy was straight forward once the first 4 months of nausea had subsided. Unfortunately, the labour was so traumatic that it put us off having another child for quite a long time. We imagined a 3-year age gap would be ideal but then a major work project that I wanted to see through got in the way for a bit too.
In early 2016 we began to try for our second child and again, conceived quickly. The nausea was back with a vengeance and I was really miserable. Quite a few people I knew had sadly had miscarriages between their first and second children and so I was mindful of this and we decided to not even tell our own families our news until after the 12-week scan. This was hard because of how ill I felt but it was really exciting to think we could break the news to our daughter and parents, 3 months into the pregnancy. I felt like my growing tummy was getting more difficult to conceal and was relieved when the date finally came around.
And then there we were. We became that ‘1 in 4’. I can’t even remember what the sonographer said to us but there was no heartbeat and the baby only measured 6 weeks. We were escorted back through the waiting room past the rows of happily pregnant women to a small room with a box of tissues. I was in complete disbelief and instant grief for the lost future I had planned in my head. I couldn’t believe how much my own body had deceived me. And so, began a nightmare that was to last far longer than either of us ever imagined.
The trauma of having to tell our families that not only were we pregnant, but we now weren’t was awful. We put on brave faces for our daughter but there’s no way that she failed to notice how sad Mummy was.
I went through surgical management of the miscarriage 3 days after the news, under general anaesthetic. Unfortunately, the procedure didn’t seem to work, and it was repeated a month later.
Later in the year, I felt things were not right, so we were referred by the GP to the local fertility clinic. By the time I got my appointment in March 2017 I was around 5 weeks pregnant again, but another loss was already starting and this time it was a suspected ectopic. I had surgery again on my 36th birthday and a hysteroscopy showed some damage or scarring in my uterus which was treated. A month or so later, we were told things looked normal and we should keep trying. We were pregnant again after 3 months.
Because we were under the fertility clinic, we were eligible for an early scan at 6 weeks. I don’t really remember how hopeful I was about this. It’s all a bit of blur, looking back. Unfortunately, the result was inconclusive as it showed just an egg sac and yolk but no heartbeat. I was sent away and told to return 2 weeks later. This scan showed a heartbeat, but the baby only measured 6 weeks. I guess it was obviously over but there’s always hope until you have a definite answer. Maybe your dates are wrong and if you Google hard enough, you can always find evidence of that miracle baby which was written off in early scans.
The next scan revealed that the heartbeat has stopped and there had been no further growth. I really wanted to avoid surgery again so was advised to wait it out to see if I would miscarry naturally, but nothing happened.
I had surgery again in September 2017, the week our daughter started school. They carried out genetic testing of the products and found that there were chromosomal defects. I won’t ever forget those words on the letter which told us the condition was “not compatible with life”. Over the next few months, I had further routine tests for recurrent pregnancy loss, but all the results came back normal. This is actually the worst-case scenario in some ways. The diagnosis of “just bad luck” is really unhelpful. My doctor had no other answers but also suggested that my age was not helping, and it was likely that poor egg quality was contributing to the losses. However, the only treatment option seemed to be IVF with additional genetic screening (paid for privately and very expensive) and as we didn’t seem to need help conceiving, this seemed an expensive route with no guarantees of any success.
I took a longer break from the eternal cycle of trying to conceive until April 2018. I began seeing an acupuncturist monthly and focussed on the research I had undertaken which showed it was possible to improve egg quality through diet and the reduction of plastics and other household chemicals. I stopped wearing nail varnish and perfume, using fragranced products, tried to cut out stress (impossible), get more sleep…
I conceived after 2 months of trying again and all looked and felt good. I took low dose aspirin and progesterone, daily. After the efforts I’d gone to, I really thought this was the one.
Sadly, the 6-week scan showed nothing at all in the correct place. Pregnancy hormone levels were high and so another ectopic was feared. I was closely monitored for over a week and told to cancel the holiday we were about to go on. Hormone levels remained static and there was disagreement amongst doctors about the diagnosis and treatment.
A decision was reached to go in for another hysteroscopy with surgical management of miscarriage (should pregnancy tissue be found), in the hope that HCG levels would reduce afterwards, to prevent an unnecessary laparoscopy and removal of a fallopian tube. This seemed to work, and I avoided this more drastic outcome.
At this point I decided to pursue a change of direction. I was completely frustrated. All tests were clear, and I was simply told that the more times I was pregnant, the more chance of success I had. There was no further treatment that could be offered to me. I couldn’t keep going through this cycle of conceiving, waiting an anxious 2 weeks or more for an inconclusive scan, being sent away not knowing if I had a viable pregnancy or not and eventually having surgery under general anaesthetic because my body never couldn’t even seem to miscarry properly. I was growing more concerned about the potential damage that might be caused to my insides with all of the surgery which would only make matters worse.
I’d previously explored the theory of Natural Killer Cells; where the woman’s own immune system basically rejects the fertilised egg; and dismissed it. Even a small amount of internet research highlighted overwhelming scepticism, lack of proper research and clinical trials, women warning others off it etc. My NHS consultant told me it was a complete ‘red herring’. It was also expensive! I hated the idea of women being taken advantage of because they were so desperate for a baby, they’d try anything. I was reluctant to become one of them. However, I also couldn’t let the idea drop. What did we have to lose? I couldn’t face the thought of getting 5 years down the line and looking back with regret that we didn’t try absolutely everything.
We decided to book an initial consultation in July 2018 and at least pursue the testing, if we felt it was worthwhile. Even this part was to cost a few thousand pounds. Within a month I’d had the first appointment and had returned for my results that showed I had a high level of aggressive killer cells. Having a diagnosis of any kind and a doctor who believed he could easily help was a turning point for us. It gave us hope and something to work towards.
It hasn’t been easy, and I was still doubtful of having success. The treatment involves a lot of appointments, a lot of money, high doses of drugs which are slightly experimental, side effects, more stress, constantly focusing on what day of the cycle you are on, being forced to take early pregnancy tests each month and facing the disappointment of yet another negative result after pumping drugs into your body. After 5 long months I had success and then spent Christmas 2018 waiting for another 6-week scan, thinking yet again this would be the one. But on 2 Jan 2019, there was nothing to see on the ultrasound screen but yet another empty uterus. I felt ridiculous, like it was all in my head. How could this be?
So, more drugs were added to the treatment plan and we plodded on. I really did feel like this was the last chance because I wasn’t sure what options were left after this. Maybe there was another undiagnosed cause for the losses, and I’d gone in completely the wrong direction, foolishly sinking all our money into the ‘red herring’. The only thing that kept me going at this stage, was the friendship and belief I had in this group of women. They simply had too many collective successes for this theory to be made up. Still, I was starting to think that it was time to move on with life. I figured we’d give it to the end of the year and then accept that we were a family of three for good.
After what I consider a bit of a blip – a very, very early loss known as a chemical pregnancy – I conceived for the 8th time.
We are now at 30 weeks pregnant; our baby is due in December 2019. Around the 6 – 8 weeks mark I nearly cracked up. I was having panic attacks at work, completely freaking out at the lack of control and knowledge of whether this pregnancy was going to work out or not. Only time and weekly (sometimes twice weekly) scans have got me through to the point where I can now feel the baby moving each day, providing a small amount of comfort. Every single time I lay down seconds before a scan, I think there will be no heartbeat or some other disaster.
I haven’t dwelled too much on my feelings whilst I have told this story. But there are a few things I wanted to mention. The hardest parts I suppose.
1, Our daughter has asked us almost daily for a baby, for the last 2 or 3 years. She’s never known when I have or haven’t been pregnant and I’ve only more recently been able to explain to her that we have been trying our best, but the babies just stop growing. She’s taken this quite well and we can have some amazing conversations, but I have no idea what she has taken in, how much she worries about and how much any of this has affected her. Sometimes she can hit a raw nerve without knowing it and its painful. She’s seen me cry and be angry at life more that I’d like.
2, We’ve had to seriously readjust our idea of what our family was going to look like and for some reason, the age gap was such a massive hurdle for me to get over. I suppose I didn’t want to be stuck in this baby stage at nearly 40 and I wanted them to be closer in age. I think I’ve almost been through a process of grief for this imaginary family and have thankfully come out of the other side.
3. Okay, I love and appreciate the NHS and I’ve been looked after by some incredible individuals. But there have been some really awful and unforgiveable bits which have made difficult situations a
million times worse. Why do you have to go to maternity ultrasound for all investigative fertility tests and early scans for more-than-likely failing pregnancies? Why are you forced to sit and watch happy couples loudly waving their scan photos around? Why is the fertility clinic waiting room slap bang in the middle of two antenatal units, forcing you to watch pregnant women walk past continuously? Why do you have to be taken to theatre in exactly the same place women are having their babies? Why is the whole process of being seen in the early pregnancy unit just so awful from start to finish? Very sadly, too many of the staff who have dealt with me are overworked, underpaid, unappreciated and just plain tired. Some have lost all traces of empathy. I’m no snowflake when it comes to this stuff as I’m used to dealing with it, but the abruptness and lack of care has still reduced me to tears on more than one occasion.
4. Fertility issues and pregnancy loss is just plain lonely. There’s no two ways about it. Its all- consuming and drives you to insanity. It’s all you can talk about with the people who let you and all you can think about for the rest of the time. I HATE how much of my life it has overtaken and what a fertility-bore I must have become, often forgetting to even ask how someone else is because I’m so self-absorbed at times.
5, My relationships with friends and even some family have been tested. It’s no one’s fault and I have no bad feelings towards anyone, but the feelings of bitterness, jealousy, envy and anger have occasionally raged and been very difficult to take control over. It doesn’t matter how irrational you know you are being when you feel like melting and crying for days over every new pregnancy announcement or ill-placed but well-meaning piece of advice. It just hurts like hell. As with any kind of grief, we are notoriously bad at dealing with it as a society and its hard to not take people’s silence or eagerness to say exactly the wrong thing personally.
I’ve felt an overwhelming sense of being left behind as close friends have moved on with their families. The similarities that we once shared, having children of the same age, have disappeared as more children have arrived and inevitably change conversations, common interests, even the places you can go for a day out or to eat. Again, it’s something I’ve got over and have no bitterness over, but it was tough to handle whilst I was adjusting to it.
On the plus side, I truly believe that although this has been the test of our lives and there have been some difficult patches, my marriage has been strengthened. We don’t talk about stuff anywhere near enough and I don’t fully comprehend the affect that all of this has had on my husband, but he’s never failed to support me in his quiet way and never once questioned the money and time we’ve spent on this, when other people have. I have my own level of guilt to deal with, in that respect so don’t really like to hear it from others. I really believe we’ve been a complete partnership in this journey and it’s not been a case of him going along with my obsession.
I’m also incredibly grateful to close family members and friends who have continued to support us and will us through some difficult times. They definitely know who they are.
Finally, I’d like to say that I’m proud of myself and us as a family. I am hoping that we’ve managed to maintain a relatively normal life for our daughter through all of this and there won’t be any long- term negative effects. I hope we’ve been able to teach her that things don’t always work out as you imagined and that you can readjust, whilst still fighting really hard for something you truly believe in. We’ve learned to do our own research and not take the first ‘no’ for an answer and I hope that we have shown her that when you are in your darkest moments and feel like all is lost, a rainbow can suddenly appear and see you through another day.
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