Karin: ‘I have had numerous miscarriages. I suffered from secondary infertility. I have also had to terminate a pregnancy as my baby would not survive outside the womb.’

NW8-mums has a support group should you need a safe place. Please email Karin on NW8mums@gmail.com. You are not alone.

Miscarriage

Miscarriage is a lot more common thank you think. Sadly, it is still not often talked about. I have friends who haven’t told their employers why they have needed to go in for surgery due to having miscarried. A number of friends also haven’t told their family or friends that they have miscarried. The more we can talk about it, the more we will help others feel more able to share their stories and be less isolated and alone in the horrible journey of miscarriage.

It is difficult to understand the impact of miscarriage if you haven’t experienced it. It is the most horrible thing, often a complete shock and no matter how many times you go through it, it affects you every single time and not always in the same way though. It is quite common to also have a backlash around the time your baby would have been born. And if you know someone whose child was born around the same time, seeing that child can sometimes be a very stark reminder of your baby who didn’t make it.

Most women blame themselves; it is quite normal. The reality though is that mostly it has nothing to do with what you did or didn’t do.

If you suffer from recurring miscarriages, it can be particularly difficult seeing your relatives and friends having children around you. If you already have a child and you can’t get pregnant again, or struggle to keep a pregnancy, it can be even harder. Especially when people around you have their second and sometimes third child. Life can seem very unfair. When on top of this, you are constantly asked by anyone and everyone when you are having another one, it can be extremely hard.

Remember you can always speak to your GP. It is worth getting investigated. Sometimes it can be a fairly simple solution although often by the time you get to that point nothing feels very easy anymore. However, at the time of writing this, you have to have had three miscarriages before the NHS will send you for testing.

Below are some links to websites and clinics that have been very helpful to me and friends of mine.

General Information

Miscarriage/Recurring Miscarriage Specialists

Mr. Raj Rai and Professor Lesley Regan at St Mary’s Hospital are renowned researchers into recurrent miscarriage.

Tommy’s Charity provides information and also clinics.

NHS – Below are links to our closest NHS hospitals who all have fertility and reproductive care clinics.

St Mary’s Hospital

UCLH

Royal Free Hospital

Private Clinics – Just a few to give you a head start

The Recurrent Miscarriage Clinic

CRGH

ARGC

Late Miscarriage/Terminating A Planned Pregnancy

Perhaps one of the worst things is losing a child way into your pregnancy or being faced with terminating a pregnancy. I don’t believe you think terminating a pregnancy is a decision you will ever have to make. Going for your scan only to have such horrible news, is worse than anyone can ever perceive of. It is the darkest place ever imaginable.

If you are in this situation, one of the best places for help is Antenatal Results and Choices (ARC).

If you lose your child or have to terminate past 14 weeks, you are induced and have to go through labour (here in England at least). Something to be aware of is that your body goes through the same thing as it would have done had the outcome been a positive one, i.e. a healthy child. Your hormones go crazy, your milk may come in and if you are prone to depression, watch out for postnatal depression. Your GP will be able to help by offering counselling for instance.

Please know you are not alone in going through this, and as hard as it is, try to talk about it with the people you feel you can trust.

Termination, even for medical reasons, is a particularly touchy subject and it is easy to feel that others judge you for all sorts of reasons. It is so hard to go through something like this as it is anyway, and you really don’t need to feel or hear the opinions of others. I always try to remind myself of how easy it is for others to judge, but how many have really been faced with the same situation? I have gone through this. I am not a therapist, but please feel free to contact me confidentially if this is happening or has happened to you.

Pregnancy After Miscarriage

This is (part of) my story. I have left out quite a lot, because I can’t go there.

In 2012, after having had numerous miscarriages, I started seeing a private specialist to help me understand and investigate why I kept miscarrying. Although we have private health insurance through my husband’s work, no pregnancy related things were covered, but we were desperate and decided to at least start with blood tests to better understand why I kept having miscarriages whilst also being aware there was a chance we would never know why.

We took this decision after I learned from my very supportive GP that because we already had a child, we would be bottom of the list for any miscarriage investigations, as in the eyes of the NHS, as it was put to us, ‘our family was complete’.

It was incredibly frustrating and upsetting to learn this, but I could understand that given the limited funding, they have to prioritise people with no children. This could of course have changed since 2012, but I doubt it.

Fast forward to a few months later in 2012 and I got pregnant again. I was extremely nervous and I was also not in great shape given the medication I had to be on to try to keep the pregnancy. We kept having scans privately every week with the private doctor. We also started the NHS antenatal services at UCLH which is where I was seen when pregnant with my daughter.

I thought that regular scans would mean all would be well. Sadly, that was not to be. Our private doctor told me he had some concerns the baby was on the small side, but that the UCLH sonographers would be able to check in better detail as their machines were much more sophisticated, but that he was sure it would be fine.

We had a scan at UCLH. The baby wasn’t co-operating and we had to leave for lunch and return. They tried again. It was very quiet during the scan. Then we were told to leave, wait for the results and return 30-45 minutes later. I knew this was standard practice (and that it was a change from when I was pregnant with my daughter), so I wasn’t too concerned. Yet.

When we were called in, we knew something was not right. They told us they had some concerns and they had discovered what they thought was spina bifida. They were very good in how they dealt with it; very sensitive in how they spoke to us. They told us they had popped around to the Fetal Medicine Unit to show them the scans and that the Fetal Medicine Unit wanted to re-scan me with their top specialist and their specialist consultant.

They took us around to that department and we had to wait.

We knew it was potentially serious, but I didn’t really know anything about the condition; it is not something you hear about very often and therefore we thought it couldn’t be too bad. Whilst in the waiting room I googled it and had a shock.

We were called in and they re-scanned me only to confirm the worst. The only reason our baby was even moving was because it was being rocked in the amniotic fluid. Such a big hole in the spine, they said, they had never seen before. And definitely not so early in a pregnancy. We were told our baby would not survive outside the womb.

After the scan, we were called to a private room where we were told about our options. We could continue with the pregnancy and see if the baby would make it through to the end and perhaps at best, if surviving labour, live for an hour or so and then die. Or, I would go into labour naturally at some point and have a stillbirth. The last option was to terminate the pregnancy.

It was the hardest and the ‘easiest’ decision to make. It was the hardest, because nobody ever thinks you will have to make such a decision, and after so many miscarriages and finally having a pregnancy that was going well only to be told that your baby won’t be able to live outside the womb felt like the biggest slap in the face imaginable.

At that point our daughter was also a bit over 3 years old and she had already endured me being pregnant so many times; being sick from hyperemesis gravidarum from 5,5 weeks every single time and having to get emergency nannies at weekends (my husband worked weekends for 10 years and we have no family in the country), because I wasn’t able to take care of her was already difficult for me to deal with in terms of guilt as well as physically challenging given the nausea and vomiting.

So being faced with continuing the pregnancy knowing there would be no happy ending, potentially some serious complications for me too as well as how ill from the vomiting I was, we felt the least cruel decision would be to end the pregnancy.

Before we left that day, we did a chorionic villus sampling (CVS) to see if there were any other issues e.g. chromosomal. Having that needle stuck in my pregnant belly knowing what we knew already was one of the worst experiences of my life. Tears were trickling down my face. Seeing the little baby moving around on the screen, knowing that the only reason the legs were even moving was due to the amniotic fluid, yet knowing it would not survive either way, was impossible to understand.

Part of me felt like I was in the middle of a nightmare and that I would wake up to a different reality. I thought that if I just closed my eyes, when I opened them, it would all be gone. We went home in a complete daze. I couldn’t stop crying for days. And, there was our daughter to look after.

It was a girl we later learned. She was perfect other than the massive hole in her spine and she had no chromosomal issues. I always felt she would be called Elise. The nurse, Debbie, who looked after us at the Fetal Medicine Unit was the most wonderful and caring human being ever. I will never forget her. Nor will I forget Dr Fred who scanned me then and who looked after me when I later was pregnant with my son.

I had the NW8-mums website ready, it was set to go live when this all happened. I stopped everything related to NW8-mums. Life stopped. I tried to survive mentally for the sake of my daughter. Had it not been for her, I am not sure if I would have had the strength to go on. Somehow though, I did.

I can’t even begin to describe the horror of going through this all. No words can express the pain, the numbness, all the ‘why me?’ while seeing all your friends around you have babies. To make matters worse, people constantly told me all sorts of things; ‘get on with it, you are leaving it a bit long!’, ‘you are denying your daughter a sibling’ (that one I heard a week after the termination) and one of my favourites ‘if you really want it hard enough, it will happen’ as if I had not wanted my baby girl, or any of the other babies, enough.

Her due date was 22^nd February 2013. I will never forget it. Nor will I ever forget the day we learnt our baby wouldn’t survive.

About a month after her due date, there was something local going on that I had been invited to take part in as NW8-mums, and I decided to push through with the last few things and got the first version of the NW8-mums website up and running.

In spring 2013, I was a year away from turning 40 and I felt like I couldn’t give up the thought of trying one last time. However, I knew that that would be it. If it didn’t work, that was it. No more. I had to convince my husband as he was mentally exhausted and terrified. As was I.

I decided I wanted to try the most natural way and embarked on acupuncture to get me ready to conceive. The medication that I had taken when pregnant with Elise had had nothing to do with why she got spina bifida. It wasn’t even related to my age. If anything, it is more likely to happen, the hospital told us, to teenage mums and those with very poor nutrition. I was the odd one out. I was and am a statistic at the other end of the spectrum.

I got pregnant with my son in September 2013 just after my father had suffered a major brain haemorrhage, had had brain surgery, had been in a coma for 8 days, came out of it alive, but was brain damaged, completely paralysed on the left hand side and in need of 24/7 care till he died in 2018.

At the same time, my mother-in-law in New York was diagnosed with Alzheimer’s and her condition deteriorated extremely quickly, my daughter was starting Reception and our beloved nanny of 4 years was having a second mastectomy for breast cancer and would not be able to be with us any longer.

Somehow, remarkably, despite being in the midst of one of the worst phases, one of the most stressful times of my entire life, I got pregnant with my son. My mother wasn’t happy, because she couldn’t understand how I could put myself through this once again. That was incredibly hard to deal with. In hindsight, I think she was almost as terrified as we were and scared of how another pregnancy would affect me. And especially if it, too, would end up like previous ones.

I got ill at 5,5 weeks pregnant again and was hospitalised at 8 weeks pregnant. I was bed bound for most of the pregnancy with my son, was on a 4-hour-cycle of medication during the entire pregnancy and saw my acupuncturist weekly apart from when I was too ill from the vomiting. I took my last medication in the morning on my son’s due date and he was born a few hours later.

Despite being heavily medicated to try to ease the hyperemesis, in some ways I was in a worse condition than when pregnant with my daughter. The only difference was that I knew that it wasn’t going away, that I would have to survive it – somehow – and I also knew what not to do (which was pretty much everything); after all, by that point I had been through it so many times I knew it wouldn’t go away till after labour.

On my booking in appointment at UCLH I had a breakdown. It was a Sunday evening and I remember telling my husband not to come with me because we had to get a babysitter and it would just be bloods and medical history. After all, I had done it a number of times already. So, he stayed home with our daughter.

It was the first time I had set foot in that part of the building since that dark day a bit more than a year earlier. I went in to see the midwife and of course when starting to go through my medical history, I broke down completely.

My midwife Carol Pitterson was incredibly supportive, calm and reassuring. She immediately referred me to the Fetal Medicine Unit to be looked after by them as well as by the regular antenatal team. She also referred me to the peri-natal psychologist support team and I saw an amazing woman, Claudia da Campos, weekly during my entire pregnancy.

Claudia very cleverly also booked me in for a session with her a month after my son’s birth to make sure I would have that support given my history of postnatal depression. Pregnancy depression often goes hand in hand with women suffering from hyperemesis gravidarum. Incidentally, postnatal depression is also usually a result of hyperemesis gravidarum. And of course, I did get postnatal depression again.

I was terrified, anxious and extremely physically ill from the extreme nausea and vomiting during my entire pregnancy. And as with previous pregnancies I wasn’t able to care for my daughter. At best, she could fall asleep next to me in bed at night at times when I wasn’t vomiting from the smell of everything which included her. That was all I could give her. Normally of course, I would love to lie next to her, snuggle up and smell her.

I was convinced I would lose my son too or that he would also be diagnosed with spina bifida. Once we got past 10-12 weeks when most of my miscarriages have taken place, I started relaxing a bit. However, after doing a blood test and finding out he was a boy, I was so angry. I wanted my girl even though I knew, logically, I could never get her back.

Eventually, I started coming to terms with him being a boy and started ‘relaxing’ as much as I was ever going to be able to ‘relax’ during a pregnancy.

My worry though, having got as far as the 20-week-scan and knowing all was fine, being discharged from the safe embrace of the Fetal Medicine Unit and the many reassuring scans by Dr Fred Ushakov, and now only in the regular antenatal services, was that I would lose my boy at birth. I had endless therapy sessions on this and trying to talk through my fear of something going wrong at birth.

My son’s birth was extremely quick. Too quick for my brain and body to sync. I was in the midwife led birthing centre at UCLH. All was going well. And then suddenly something happened. We were seconds away from losing him. Something went terribly wrong, the alarm was buzzing and the room swarmed with doctors and more midwives. In the end, it was an extremely quick-thinking midwife who saved his life. Sadly, I don’t remember her name only that she came back to apologise for ruining my insides in order to save his life.

I never heard him cry. All I knew was that suddenly his head between my legs was gone and I had no idea where it was. I didn’t even realise he had been born. We didn’t see him and we didn’t hear him cry.

We didn’t know if he would be brain damaged or paralysed for about 48 hours after his birth. It turns out he is a real fighter and he survived without any damage.

I will forever be grateful to the amazing staff at UCLH.