Recurrent miscarriage

A dad shares his feelings about his wife’s repeated miscarriages, and the impact on his wife and son.

As you would expect, my feelings about the pregnancy are complex. Having experienced a number of painful experiences when I was younger, I suppose on the one hand I was aware of the boundaries of where my feelings could take me and, as such, more aware about how to stop myself reaching the bottom. On the other hand, because of my past experiences I am an emotional person, which contrasted quite a lot with my partner who tends to block out her feelings.

My partner and I experienced three miscarriages; one before the birth of our first son and two before the birth of our second son. As we had been planning our second pregnancy for some time, we both really happy when we found that we were expecting. No expectations of any problems, just joyful planning of a future together, a brother for our first son, and many happy memories to come.

With the second miscarriage, we had a suspicion that something had happened as she started to experience some bleeding around 8 weeks. We had it confirmed a day later at hospital, and we were numb. We had hoped we were wrong, weren’t too surprised to hear the news, but still couldn’t quite believe what we were hearing.

The nurses were fantastic, and talked us through the facts about how likely it was and what was the success rate the next time and showed us all the cards they had received from people who had gone on to have a successful pregnancy after experiencing a miscarriage.

Funny thing was, we hadn’t told anybody except our son that we were expecting and so not only did we have to go through the pain of loss, but also tell close family and friends that we were expecting and not expecting at the same time. And whilst it was lovely to hear everybody’s concern, it is hard to talk to people who hadn’t gone through this and to listen to the well-meant platitudes that everything would turn out alright.

At some point, you just want to curl up in a ball and not wake up, and I had many nights where I couldn’t stop crying about it (but knowing I wanted to try again), but I had a partner who didn’t want to talk about it, and no-one else to turn to. So I turned to poetry and wrote two to three poems about my feelings (put on the Miscarriage Association website), did some research and found out about the M.A. and wrote down some of my feelings on the forums, not to have a big chat, but just to be able to let it out.

The most difficult thing was to talk through the issue with my son (who was 6 at the time). I felt it was best coming from myself so spent the 30mins drive from the hospital thinking about the best approach and highlighted what happened, what it meant, what the future could be, answering any questions he had and dealing with any issues he had, letting him know that any time he wanted to talk about it, just speak to me.

He bottled it up, and I found out 6 months later he blamed himself for it as he had once bumped hard into my partner. I was so relieved he had told me, and I spent time over the following weeks reassuring him that it wasn’t his fault.

Our third miscarriage was harder to take. Not only did the test results come out of the blue, the fact that it was our third miscarriage meant that our chances of success were swiftly receding and I had to deal with pressure from her step-mum not to try again as this should be her decision alone. Not that I ever thought it, as I always realised it was a joint decision (we decided we would give it one more try) and that I had to support her through this to get to the point where she could think about her thoughts on the subject. But it wasn’t appropriate for her to make me feel any worse than I already did, and we had always made sure decisions in our life were made jointly.

In the back of my mind, before we had the operation to remove the foetus, I couldn’t get it out of my head that the test result might be wrong, hearing about cases where this had happened, and was paranoid that we might be getting rid of healthy baby. Even though I asked the nurse for confirmation, I have never felt fully reassured

The feelings this time were worse, and I am still not sure how we got through it. Maybe it was the fact that the hospital were willing to undertake tests to see if they could determine whether there was an issue, maybe it was thinking about wanting Lewis to have a brother, I don’t know.

Anyway, we went to have the tests (at the same time exploring whether adoption was for us), having being told that it is better that nothing shows up as then it is more likely that it will be successful next time. My test results didn’t show anything, hers showed that she had some abrasions internally and the consultant would operate to remove them.

After this, we got pregnant again. We were more nervous than ever, fingers crossed to get past the 13 week initial stages, not telling anyone – 13 weeks of torture with more stresses to come. Due to our circumstances, we had about five or six scans throughout the pregnancy to make sure everything was OK, and the one around 20 weeks highlighted that we should be more closely monitored as the baby looked big!

Due to this, the 24 hours it took for our son’s delivery, and the fact that my wife is a very anxious person, the doctor suggested we have a caesarean, and everything turned out all right. The 30 minutes in the waiting room whilst they prepared her for the operation was the longest time in my life but the tears of joy when we heard his first cry….

Our second son was well worth the wait and makes all of us so happy, but every so often I find myself drawn to the grave where the hospital buries the remains. I have a private thought, speak to the babies we lost, apologise for not being strong enough for them, and thank them for him. I am not sure why I do it, only that I feel it is wrong to forget them and that time in our lives.

It is hard to explain to people how painful it is to go through a miscarriage as it is partly about what is lost, but also about what the future holds, and that is harder to deal with than anything else.

You move on, your relationship becomes stronger as you realise you have come through a tough time together, even though in that moment in time tempers are frayed, but you still have that loss in your subconscious.

Our contact with health professionals was brilliant, from nurses to our very sympathetic consultant. So much so that I have done fundraising for the hospital since then, and give up my Christmas presents to the children’s hospital as thanks for all the support.

Away from this, little professional support was offered to discuss what we had gone through, and it was only by the third miscarriage that we were offered tests.

I do feel that more support could be given around having someone to turn to outside of the family.

I do also think that tests should be offered at an earlier stage.

Finally, my advice to others is that you have got to look at your personal circumstances. If you require support, seek it through your partner, family, counsellors, whatever is appropriate. If you don’t, then that is fine also.

As with any type of grief, how it is expressed it is down to the individual.

As our story shows, sometimes it does pay to persevere and the pain we had to experience to get him was more than worth it. You hear stories about people that try 15 times before they are successful, but others don’t feel strong enough to try more than once and it is an area of medical research where explanations for why it has happened are thin on the ground so I can fully understand the uncertainty around whether to try again.

You have to do what is best for you, but I feel that you should at least explore how the miscarriage has made you feel, so that you can try and put it some sort of context. If this is done, then I feel that people are more likely to have a good perspective on how sensible it is to try again.

Posted in Prose | Tagged , , , |

Kirstie’s story

In a video uploaded to Facebook, fifteen-year-old Kirstie tells the story of the late loss of her son Jacob.

Shared here with permission.

Posted in Videos | Tagged , , |

Losing

Despite saying “I’m always losing things”, Catherine never uses the phrase ‘I lost a baby’. 

I am forever losing things. I can’t remember how many times I have lost my keys, or my mobile phone, as well as other annoying things such as forms from school or activity clubs. Often I will smile and say by way of apology to whomever is witnessing my current, frantic search, “I am always losing things”, and they will smile back and acknowledge my situation, or even agree that they too, lose things on a regular basis.

As easy as that losing phrase pops out of my mouth, there is one thing I never say, not to anyone: “I lost my baby”. Because as unorganised as I can be at home, I always find things. My purse turns up, the forms are usually at the bottom of my handbag and my phone likes to hide down the side of the sofa on a regular basis. As much as I lose things, I also always find them. But I cannot find my baby. Nor can I find the words to express this to others.

The worst thing about the verb ‘to lose’ is that it implies an element of blame. I don’t want to share my blame with others because it is too overwhelming to deal with. I didn’t take care of that baby well enough whilst it grew in my womb; I ‘lost’ it somehow due to something I did. Of course the leaflets you are given, and the professionals that talk to you all have a standard explanation that is given to you, and it is not unkindly delivered. But it really is nonsense, because if you have been through this experience then it doesn’t matter what anyone says or does, it happened to you, and you will always believe the blame lies with you. I feel embarrassed and ashamed that this happened, so it is easier to say nothing and pretend the whole thing never happened. Nothing lost over here…let’s move on.

But then after a while you can’t move on, and the search begins to ‘find’ the baby. You throw yourself into work or exercise or something, or like me, even more shamefully you plan another child. I concluded that if I had another baby, maybe that would be the baby that I so carelessly lost? Not everyone has this option, but I did and I grabbed that new child as she was being delivered, determined never to lose this one. I felt content and strong and powerful. I had found my baby. I went back to being the woman that just loses phones and keys and purses. I went back to being just like everyone else.

Three years later and my new child is a joy, as are my older children. But they are not my baby that I lost. I know that, but I can’t get over it, and I don’t expect I ever will. I still cannot say the ‘L’ word about him because I still desperately want to find him. So I have to be brave and say an even scarier word. Miscarriage. I had a miscarriage near the end of my second trimester and my little boy was born an angel. Maybe one day I will find him, but not in this life. All I can do is kiss the children I do have, whenever I can, and try my best to just be the woman that loses keys and purses and nothing else.

Catherine Stead

Posted in Prose | Tagged |

Flu jabs in pregnancy can save lives

A report* published yesterday highlights the importance of flu jabs for pregnant women.  MBRRACE-UK’s report on maternal deaths and morbidity studied the cases of 321 women who died in pregnancy or shortly after birth between 2009 and 2012.  They found that 1 in 11 died from flu and more than half of these deaths could have been prevented by the flu jab.

Professor Alan Cameron of the Royal College of Obstetricians and Gynaecologists (RCOG), commented:

“… Maternal deaths in the UK are rare [but] … the report highlights the importance of pregnant women having the flu vaccination when it is offered to them. This prevents poor outcomes for both mother and baby.

“Much work has been done to provide the flu vaccine to pregnant women and it is vital that they and the health professionals involved in maternity care have the vaccination to protect themselves against seasonal influenza.”

If you are worried about whether the flu jab is safe in early pregnancy,  the answer is yes, unless your doctor advises otherwise (because of a medical condition).  The evidence shows that the risks of flu to mother and baby are much higher than the risks of the vaccine.  See http://www.ovg.ox.ac.uk/flu-vaccine-pregnancy.

You can also read Public Health England’s guidance for doctors here.

Saving Lives, Improving Mothers’ Care: Lessons learned to inform future maternity care from the 2009-2012 UK and Ireland Confidential Enquiries into Maternal deaths and Morbidity.

 

Posted in news and events |

Lights of Love: remembering babies who died in pregnancy

At this time of the year, as the days get shorter, our minds start to turn to the upcoming holiday season. It’s traditionally a time of celebration, but we know how hard it can be for those who’ve experienced a miscarriage, ectopic or molar pregnancy.

The M.A.’s Lights of Love tree is a memorial to babies loved and lost in pregnancy.  On our online tree, each star holds a message of remembrance to a baby or babies lost through miscarriage, ectopic pregnancy or molar pregnancy – creating a beautiful place to mark those brief lives.

We also have a small tree in our Wakefield office.  Covered in tiny white lights, the tree offers an alternative memorial spot – or you might like to use both.  You can read about both options here.

Whether or not you choose to use the trees, please do remember that we’re here to offer support via phone, email, our online forum, Facebook and local support volunteers.

Posted in news and events |

Miscarriage after ICSI

A husband describes the diagnosis of fertility problems, undergoing fertility treatment and then having a miscarriage.

My wife and I had been married for about a year when we decided that we wanted to start a family. We had been trying for another year and nothing had happened so we decided to look for medical assistance to see if anything was wrong. The GP was very efficient and understanding and arranged for a simple check on myself as this is far simpler and less intrusive than any test on my wife. Unfortunately it was found to be that although I had a good number of little fellas, they were a little bit too chilled. It was a relief in some respect to find a problem that could be dealt with so the GP referred us to a specialist to see what options are available to us.

We talked through our situation and had more tests and it was decided that we should go through ICSI (IVF but slightly different). This wasn’t the news we were hoping for but if this was what we needed to do, then so be it. My wife had already thought this would be the result and had got her head into the right place. I had also to some extent thought this would be the outcome but hoped for something different.

I had done a little research on IVF as we had no idea there was a difference between IVF and ICSI and so I knew it wasn’t going to be a very pleasant experience for my wife. ICSI involves daily injections, tablets, 2 or 3 injections per day at some points, so this instantly gave me a feeling of guilt – it was my fault we couldn’t have children naturally and yet my wife was the one who would have to suffer the physical pain. I understand its nature and my wife was continually reassuring me it wasn’t my fault and she was happy to go through the procedure, but it doesn’t do anything to ease the feelings.

Once we had started the procedure, everything was going fine for the first few days. We were taking 2 injections per day, one to control my wife’s hormones, the other to stimulate the production of eggs. I’m sure I don’t need to go into the details of ICSI but basically my wife over-stimulated. We were told we should be getting about 10-15 eggs total, but she had over 30. My wife was hospitalised with the pain, several emergency calls to the fertility department – basically a nightmare couple of weeks for which my wife was in pain for the majority.

Once we got to the day of the egg collection, everything seemed to go according to plan but even though we had 30+ eggs, they could only collect 13. We should have been out of hospital and on our way home at lunchtime but once again we had complications and had to stay well into the evening. A 5 to 6 hour day in hospital turned into a 14 hour day in hospital.

The story gets even worse after this point but there is way too much to go into. To cut a long story short, we had 2 eggs survive and frozen so 3 months later we had them put back. We then went through the dreaded 2 week wait, the waiting period between egg put back in and earliest pregnancy test you can take. After everything we had gone through this was probably the worst, longest and draining 2 week of my life. When we finally took the test, it was 6 months of pain just disappearing when we saw the positive result.

Unfortunately about 3 weeks later, my wife had a bleed, nothing too bad and we were told that it might happen and not to worry, we should only worry if there is abdominal pain or swelling. Two days later my wife had pain and swelling and still bleeding, heavier and with clots. We called the fertility team who brought our 7 week scan a week early to see what was going on. Unfortunately we couldn’t wait that long. My wife was in so much pain and discomfort that we took her to A&E. We insisted that they find her a bed as they couldn’t scan her that day, typical busy A&E, everything took hours to organise.

Eventually she got a bed and we had a scan booked in for the next morning. Turned out we didn’t have a scan booked which was a fear of mine considering everything else has gone wrong and why I insisted she stayed on the ward – they couldn’t fob us off then. Once we did get a scan and I could see on the screen the two egg sacs, my heart skipped a beat, first because our little fellas were still holding on and second, my wife was ok, nothing was wrong inside. The person doing the scan didn’t seem to explain things to us very well, we came out of the room more confused than when we went in but our consultant would explain more. He eventually explained that it was very early and you might not expect to hear a heartbeat, but they are still in there, one is sat a little low down but all we can do is come back for another scan in a week.

I think my wife had already started to change her outlook on the situation to believe that the process hadn’t worked earlier on. A woman knows her own body and has an understanding when something isn’t right, but I couldn’t bring myself to think like that. It was only a couple of days later when my wife passed something a little different, she couldn’t see anything but she knew what it was. I kept saying we need to wait till the next scan.

A couple of days later my wife passed something again, this time we did see it. We both spent that evening looking on the Internet for people’s stories of miscarriage, pictures of miscarriage to see if what we saw was out there. Every story we read matched our own but no image looked like ours so I still couldn’t give up hope. I spent hours looking on the Internet, I knew I shouldn’t but I couldn’t put my phone down, I was in a bit of a panic and denial. My wife seemed to understand everything that was going on a lot better than me but I couldn’t accept the news until the medical staff showed me.

There was no point in going back to the hospital any sooner than our existing appointment, it was only in a couple of days. When we got to the hospital they told us the inevitable, they could no longer see any egg sacs. I was looking at the screen and I knew before she said anything, we had lost our babies. This was exactly what we were expecting but I didn’t want to believe it. What was strange however was that we were told to go another part of the hospital to see someone. We ended up in the blood test department and sat around waiting for 20 minutes to see a nurse who was very sorry for us but just wanted some details. I thought this was very callous and inappropriate.

It’s now been 3 weeks since that day and I’m not doing very well, I’m struggling to come to terms with it all. My wife seems to be doing better than myself, she seemed to already know it was bad news early on and so had time to prepare herself for the news. She also sees the whole procedure in a different way to me, she sees it that the ICSI procedure was done but it didn’t take.

I wish I could see it in the same way and maybe I would have done if we hadn’t had the first scan and I saw the egg sacs and they told us they had grown. From that moment on, they weren’t just implanted eggs, they were our babies, growing, trying to become more. When they told us that they could no longer see any egg sacs, to me that meant we had lost our children, we had two eggs put back and lost both of them.

I’ve got such a mad mixture of emotions – grief, guilt, anger, fear but also relief. I’m grieving for the loss of my two children, I’m angry at the way my wife and I were treated throughout the whole process, I’m fearful for what may happen again but I’m relieved that my wife isn’t in pain anymore or that we don’t have to go through that waiting period.

Unfortunately my job involves frequent long drives throughout the day without anyone to talk to. All I have is my thoughts and the radio. I have a great deal of time to think about what happened, get angry, get upset. Everything is a trigger – a song on the radio, a news story, families in the park, people pushing prams and honestly I don’t see it getting better. I know all I need is time, I’m not the kind of person that likes to talk too deeply with anyone except my wife.

I find it a little difficult sometimes to even talk to my wife because of the guilt. No matter how logical or how many times she says it’s not my fault, I’m always going have some guilt. Guilt over the fact it was my problem that meant we had to go through IVF. Guilt over having to inject my wife so many times a day – she couldn’t do it herself so I would do it for her and it broke my heart every time as I could see how much pain she was in. I feel guilt over the miscarriage itself, could I have done more to protect my wife, did we avoid all the things they told us to etc.

It may take a little time but we will get over this together, I love my wife so much, she has been my rock, there aren’t enough words to describe how special she is.

Posted in Prose | Tagged , , , |

Not a grey suit in sight

We’re very pleased to be able to share our Annual Report for 2013/14.

In its pages you won’t find any grey suits, but you will find:

  • personal stories and reflections from people who have been through miscarriage, ectopic or molar pregnancy
  • comments from experts involved in miscarriage research and care
  • a gallop through our activities and achievements and the people who made it happen
  • a review of our finances and the many supporters who helped achieve the bottom line
  • our plans for the years ahead

If you’d like to see more detail, please read our financial statements, including the Trustees’ report.

 

 

Posted in news and events |

My emotional rollercoaster

After a normal pregnancy resulting in her daughter, Kayleigh had a molar pregnancy and then a miscarriage.

The past 2.5 years has been a rollercoaster of emotional highs and almighty lows. Being young and healthy you assume falling pregnant will be a breeze, especially when you’ve already managed to have a perfect little girl. So when my partner and I decided we’d like a little brother or sister for our little girl we never thought we’d end up on the journey we have been on.

After having tests for endometriosis and having a routine ultra sound scan when I was told I was in fact 6 weeks pregnant, we were elated. Going from thinking we may have some issues conceiving again to in fact being told we already had a little miracle cooking was amazing. However, from the moment I was told I was pregnant I knew I was never going to meet my baby, and when I started spotting and cramping 10 days before my 12 week scan whatever anyone said could reassure me.

When I look back now I wish I had demanded an early scan but when my midwife is telling me “some woman sometimes have spotting” and my GP examines me and tells me everything looks fine what else am I supposed to think. But as a woman I knew something wasn’t right and my suspicions were confirmed when the day before my 12 week scan, I was putting the Christmas decorations up with my 3 year old when the cramps hit me like a bus and the bleeding was extremely heavy.

I will never forget that night, being admitted to hospital and told I was having a miscarriage and having to decide whether to have the D&C or go home and wait for it to pass naturally. Everything I had been planning for the past 6 weeks just shattered in minutes. How do I make that kind of decision? I didn’t want to make that decision, I wanted to go home and pray that some kind of miracle would happen and I’d wake up and everything would be ok. Little did I know that wasn’t the end of the problem.

A week after the D&C the doctor’s call to say I’d had a molar pregnancy and I would need to send off urine and blood samples to Charing Cross hospital every two weeks and we wouldn’t be able to try again for 6 months to a year. From that moment on I decided that was it I can’t go through this again and I didn’t want any more children. I lost 2 stone in weight, I was signed off work and I was having regular panic attacks. I’d hit rock bottom, but I felt like I was over reacting because I knew how common miscarriages were. I felt like people were thinking ‘oh come on snap out of it. It happens to hundreds of women every day’ So I kept most of my emotions bottled up until now and decided to write down how I felt as I’m sure every woman who has gone through this has felt the exact same.

On my 25th birthday in 2013 I had the best birthday present ever, a positive pregnancy test!! But once again the feeling of never meeting this baby again was back. I put it down to because of what happened 18 months ago. After already having one miscarriage and being told I didn’t have endometriosis I really thought that the first miscarriage was just one of those things that happened and I was fit and healthy and there was no reason why it would happen again. Until, the day before my dating scan at about 9pm I go to the toilet and I’m spotting again.I cannot describe the feeling I had. Everything just seemed to go black, I felt sick and everything I felt 18 months ago I was feeling all over again. I went to bed telling myself it’ll be fine in the morning.

My father came to pick my little girl up in the morning and wished me luck and with a smile on my face I waved goodbye to them and drove to the hospital. I remember sitting in the ante natal waiting room with all these pregnant woman and their partners looking excited about seeing their little miracle for the first or second time. So once again I go for the ultra sound and I can see on her face that it’s not good. She apologises and says she can only see the remainders of a pregnancy sack but no foetus. I can feel my eyes welling up and I can hardly see her face through the tears anymore. Why me, why again? What didn’t I do right? And then I feel guilty again because some women go through this 10 times before they finally have a successful pregnancy and here I am crying because it’s happened twice. So the nurses wanted to do a pregnancy test just in case it was too early to tell on the scan. So I spend an our drinking cup after cup of water and I just cannot wee for the life of me!! I remember just standing alone in the corridor crying thinking today was not supposed to turn out like this. It was supposed to be a happy day and I could go home and tell my partner how far gone I was and a due date etc. But here I am in a waiting room full of happily pregnant women trying to wee into a cup.

I had a few blood tests over the next couple of days to make sure the pregnancy hormone was decreasing as it should and they confirmed I’d had a miscarriage.

All the emotions I’d finally dealt with over the past 18 months had all come back and I just didn’t want to deal with this anymore and honestly the only thing keeping me going was my daughter and my partner. You start to blame yourself, you feel like you can’t seem to do what a woman should be able to do. I felt like I was letting my partner down because I couldn’t give him another child like I should be able to do.

I decided to go to the doctors to see if there was anything they could do to maybe try and find out if there was a reason I’d had two miscarriages or whether it was just one of those things. But when I was told I would need to have had at least 3 miscarriages before they would do anything I just remember thinking why would you do that to a woman? Going through it once is hell but letting a woman go through it another 2 times before they’ll look into possible problems is in my opinion cruel.

I don’t know if I’ll ever decide to fall pregnant again or not. I’m full of dread every time I even think about maybe trying again. I’d love to give my daughter a sibling and the thought of being only 26 and never having that weird but amazing feeling of a baby growing and moving in your tummy is heart breaking but I suppose never say never.

In April 2013 my partner done an amazing thing and ran the London Marathon for The Miscarriage Association. I cannot describe the pride I had for him that day. The thought of the money he raised to help people like ourselves was amazing. It was an emotional day and probably quite a painful one for him! But I am so very proud of him and everyone else who ran for the charity and truly hope the money has made a difference to people.

Everybody deals with things in different ways and there is no right or wrong way to feel after a miscarriage. But I do feel it is something people should feel like they can speak openly about it. I have found out quite a few people I know have had miscarriages in the past that I never knew about before. As my mother would say, “a problem shared is a problem halved.”

Kayleigh Ellis

Posted in Prose | Tagged , |

Speck

You are my fish-flapping, lost, slip of life,

My speck, I had only a short time

With your real-unreal, what-might-have-been image,

Softly drawn in the phosphorescent-underwater still,

I could see your head, your rump

Raw with silver-green loss

I wanted longer.

Posted in Poems |

Ectopic pregnancy

An ectopic pregnancy is one that develops outside of the womb (the
word “ectopic” means “out of place”).  Between 1 and 2 in 100 pregnancies in the UK are ectopic and it can be a very distressing and frightening experience.

Our new leaflet explains what ectopic pregnancy is, provides clear and up to date information and answers some of the most common questions about both facts and feelings. We hope this will help at what can be a very difficult time.

The leaflet is written for a non-medical audience.  Some of you might also be interested to view a short teaching video for GPs and junior doctors, in which Professor Tom Bourne discusses both the medical and emotional aspects of ectopic pregnancy.

Our sincere thanks to Prof Bourne and to the BMJ for allowing us to show it here.

 

Posted in news and events |