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 Personal Reflections (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 Personal Reflections (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 Personal Reflections (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 |

I’m sorry

Laura shares her story of miscarriage and the next pregnancy, hoping it might help others in similar circumstances.

I’m sorry because if you are reading this then it is highly likely that either you have had a miscarriage or know someone that has, and it’s a devastating thing to happen.

The pain of losing a baby is indescribable and I found that the only people who understood it were those that had been in the same position.  So this is my story.

The moment your world falls apart is one you never forget. It feels as if everything has stopped, and then there is a tiny moment of hope when you pray that it’s all a bad dream.

I stared at the screen willing our baby to move, to make a sign to show he or she was alive, to prove the sonographer wrong.  But there was no movement, no heartbeat. Our baby had died just three days earlier, at 7 weeks and 5 days.  I’d had a missed miscarriage.

No matter how much you read about it on the internet or try to understand what happened and where things went wrong, you can’t.  I became somewhat of a recluse and didn’t want to face the world.  I had no conversation, no interests, just this constant pain and sadness that I felt would never go away.

Days became weeks, weeks became months and the tears continued. There was a hole in my heart and a piece of me missing.  I suddenly seemed to be surrounded by pregnant women, and every time I heard of a friend having their 12-week scan it felt like a knife through my heart.

I cried everyday for our baby and prayed that he or she would return to me. Those months were the darkest of my life.

I don’t like to say “I got through it” because I don’t think of a miscarriage as something you get “through” or “over”, it stays with you forever and becomes part of your life but you learn to live with it.

And we tried again.

It didn’t happen the first month, but it did the second and for the first time in what felt like a long time, I was happy. The tears were of joy not sadness.

Having the early scan was probably the most nervous day of my life. I feared that history would repeat itself and questioned whether I was strong enough to have another miscarriage. Thankfully I never had to find out.  Our beautiful baby daughter was born a year and two days after the worst day of my life.

It was a turbulent year, a roller coaster of emotions but it ended with pure joy. At my lowest point I didn’t think I would ever stop feeling the pain, but I did.

It does get easier I promise, but it takes time. Take one day at a time and don’t push yourself to be happy. Do whatever you need to to get through the dark days. Take comfort in knowing that you are not alone. Believe that your baby will return to you, stronger and ready to face the world, and together you will be an unstoppable force.

Laura

Posted in Personal Reflections (prose) | Tagged , |

All the Questions

How can I miss you?
I never knew you.
How can I feel empty?
You’d barely begun.
How can my life change
When nothing is different?
Except that you were, then you weren’t
Now you’re gone.

How can my tears outweigh
What you had measured?
And also outnumber
The days that you were?
Why do I lie awake
Wishing things different?
When I know this is common
And life isn’t fair.

Why can’t  I forget?
With nothing to remember
Just let go of your thought
When that’s all that I’d got?
When will I ‘move on’
And ‘get back to normal’?
And how do I start
Without you, little dot?

- Steph Warren

Posted in Personal Reflections (poems) |

Miscarriage after IUI and IVF

A partner tells of her wife’s miscarriage at thirteen weeks of twins, conceived after several rounds of IUI and then IVF.

As I write this it is 5 days since we had the scan at which the sonographer told us that our long awaited babies had died. Tomorrow we are meeting with the funeral directors to arrange the cremation of our 13 week gestation identical twins.

My partner and I have been together nearly 10 years, married/civil partnered for 3 years, trying for a baby for 2.5 years. We have had 8 rounds of IUI and then had one round of IVF, which worked. We were delighted and so excited when the pregnancy test finally showed positive and even more so when the first scan revealed two heartbeats. We had another scan at 9 weeks and could see the two of them moving around. After we got past the 12-week mark we started to relax, thinking that the hard part was over.

We went to the clinic last week excited to see our babies and excited to finally be able to share with everyone our amazing news.

We met a lovely doctor and had the consultation first before the scan due to the clinic being busy. We went into the scanning room and as the sonographer scanned and the shapes of our babies came on screen, I thought it odd that there was no movement. She took some measurements and then turned to us and said “It’s not good news I’m afraid, your babies don’t have any heartbeats”. She ran a quick trace to confirm and then walked out to get the doctor.

I immediately broke down in tears, which must have seemed strange to the staff seeing as my wife was the one carrying, but I am a much more emotional person whereas she likes to take a rational and practical approach to situations like this. Only once we are alone and it has sunk in will she break down. The doctor talked to us about possible reasons for miscarriage and then said that there were three treatment routes – surgical, medical and natural. He recommended that we went for the medical route in order to try and avoid any damage to her womb and any possible side-effects that may cause future fertility issues. We agreed with this, then walked out of the hospital shell-shocked.

We didn’t really know anything about miscarriage – we both mistakenly thought that at this early stage in a pregnancy, they would just dissolve into the body. But when the doctors talked us through the process I suddenly realised that she was effectively going to have to give birth to them. I was absolutely terrified, but she remained calm. When I asked her how she could be so calm about everything, she said that whereas I was seeing this as losing them, she knew that they were already gone and had been for a little while. The medical miscarriage was therefore something she just had to do.

36 hours after taking the first dose we had to go back to hospital early in the morning for the pessaries to be applied. I had in my mind horrible images of lots of blood and my wife being in horrendous pain. My only wish at that point was that it would be quick for her. As it turns out, the whole process was not as terrifying as I had anticipated. We watched a film whilst waiting for the drugs to take effect and when she started having cramps the nurses gave her paracetamol, then codeine, then pethidine and finally gas and air as the pains got more intense. She remained on the bed and when the nurse came in to check on us, she looked and said they had come out.

……

I wrote that 7 weeks ago – I couldn’t finish it because I was too upset. The whole physical experience itself in hospital was nowhere as bad as I feared. The hospital staff were amazingly caring and we came home the same day. Our friends and family have been so supportive. I have been in contact with a local miscarriage group who have also been very supportive and full of help and advice and understanding.

We have gone through a lot of emotions, which I think any couple regardless of their sexuality, will go through. We have been devastated, emotionally drained, numb, tired, angry, frustrated… I went through a stage of feeling extremely strongly that I wanted to be pregnant the next time – partly I think so that I could protect my wife from a miscarriage ever happening to her again and partly to fill the massive hole in my chest.

The first time I laughed at something a friend said I immediately felt guilty. I was scared to leave my wife alone as I was waiting for her to fall apart. I felt pathetic that I kept breaking down and didn’t want to cry around her when she needed me to be strong. She has her moments of upset, where she’ll shout for no reason or cry and cry and cry but she is pulling through, she says due to me being her rock though I feel completely useless!

I feel partly a bit of a fraud for having not been the one to physically go through the miscarriage, as if I don’t have a right to be as upset as she is. But I know that this is a journey we are both on and having seen our consultant again (test results showed that the miscarriage was due to chromosomal problems) we have been told that if her blood tests come back with normal levels, we can try again in the new year with another blastocyst. So we’ll be back on the roller coaster, and hopefully this time end up with a healthy happy baby at the end of it. But we will never forget our first pregnancy or our first babies, Drew and Kenzie, who we will forever hold in our hearts.

Posted in Personal Reflections (prose) | Tagged , , , , , |

Gone but not forgotten

Babyloss Awareness Week, from 9-15 October each year, offers an opportunity for people to mark the brief lives of babies lost in pregnancy, or during or shortly after birth.  This year’s event was no exception.

What was exceptional was the number of people who engaged in the event, one way or another, from those who lit candles on 15 October as part of an International Wave of Light, to those who shared those images on social media; those who were brave enough to begin conversations about pregnancy loss to those like Claire Daly and Jessica Zucker, who spoke more openly about the impact it had on them.

Miscarriage, ectopic pregnancy, molar pregnancy, stillbirth or neonatal death – these tiny lives ended almost as soon as they began, but they mattered; lives that were gone far too soon, but not forgotten.

Posted in news and events |