I feel guilty when I laugh…

So… the annual #waveoflight is on the 15th October at 7pm, as part of Baby Loss Awareness week (#BLAW2018). Any other year and this united remembrance of lost babies would have passed me by. Little did I know when I got a positive pregnancy test in January, that I too would be lighting a candle this year, remembering not ONE but TWO of my babies – one boy and one girl – that were born sleeping this year, only 5 months apart.

This isn’t going to be a pity me post, but it’s my story, and I want to tell it. It also won’t be the “best practice” length of 500 words… no one can describe losing two babies in just 500 words. I quite understand if no one reads to the end, in fact I highly doubt people will, but it has been a cathartic exercise for me, so perhaps just bear with.

So here is how it happened…in April we were delighted to be pregnant again, so pleased to be giving our lovely boy a sibling. We had the harmony tests done at 10 weeks, and all the syndrome tests came back as 1 in 10,000 (it’s a private test that is more accurate than the NHS, but we thought it was worth the money to make sure we knew early on that everything was ok, having had quite a troubled first pregnancy) – and we were also told we were having a boy – as they can test the DNA in my blood. Our 12 week scan went well, and we told all our friends and family. We were due to have a 16.5 week scan on Monday 16th April (the Drs wanted to check our sons kidneys, as at 20 weeks when I was pregnant with my first son they discovered he had a problem with his kidneys). Unfortunately, a week before this I became ill and started bleeding. Initially I got sent to Basingstoke hospital, had a few checks, but was sent home, the presumption being it was just a bit of spotting. Sadly I continued to bleed all week, and after my midwives advice drove myself to RSCH A&E on the Thursday. My bloods showed I was fighting an infection, but again bedside scans and checks said everything was ok with our baby. My birthday was on the Saturday, and I woke up with horrendous bleeding, thinking then that our boy was still leaving us – and was just taking time to go. Again checks were done, and I was sent home so I could go for a birthday meal with my husband and son, with the view to coming back for a detailed scan on the Monday.

I went home feeling hopeful, I was feeling well enough apart from the bleeding, and the hospital were confident that the antibiotics were working. However, the following morning my waters broke. We naively went to the hospital not realising this meant the pregnancy was all but over. I was taken into a small side room, to have a bedside scan, again believing it would be ok, my husband was parking car and getting me a drink. When they scanned all my waters had gone, but the babies heartbeat was still beating – you could see it and hear it. My husband came in the room, and I will never forget the look on his face when they broke the news, to this day it’s etched into my memory. They then told me that I would be taken through to the a special “delivery suite” called the Forget-Me-Not room – I couldn’t comprehend this, I had never realised that I would now have to give birth to my son, I thought there would just be some sort of operation. At one point they even said he might be born alive for a few seconds, this was terrifying, but for some stupid reason gave me hope.

It was not that simple though…as his heart was still beating, we had to wait for it to stop before they were able to induce me. They said in VERY rare cases waters where only a little water had been lost, it can build up again, but I had all of my waters, so there really was no hope. We then had to wait an agonising 10 hours for his heart to stop beating, which included a scan and use of a doppler, and being told if my infection levels continued to rise, we might have to abort the pregnancy. At 4pm it started raining heavily, and I feel strongly that’s when he left us. It wasn’t until around 9:30pm that a Dr came to scan me, and we saw no heart beating on the scan. We then had to wait again for a second Dr to confirm this – cruelly the Dr was the same one that had helped me deliver my son two years previously.

Then the induction started, one pill every four hours. They told me to sleep in between, but I just lay in the dark room, with my husband beside me, trying to absorb what was happening. Three lots of pills later, at 9am the following morning, 24 hours after my waters broke, the contractions started. With the help of gas and air, Max was born at 10am, weighing 113 grams. The midwife who handled it all, Eve, was phenomenal – I don’t know how someone in that position copes so well. We saw him to say goodbye, and had him blessed by a priest. We decided against an autopsy, just feeling he was too little and had been through too much to be sent off and tested. I had many blood tests done, but they never provided any answers.

To say we were devastated doesn’t even come close. There are no words to describe how you feel. I had started to show, but felt so empty and such a failure. I couldn’t believe we then had to plan our babies funeral. Three weeks later we were at Guildford crematorium, we had both chosen a song and a poem, and attended on our own, it was a grieve we wanted to deal with in private. We spread his ashes somewhere special to us, and I added to the memory box the hospital gave us (which included a matching teddy and hat that he had in the coffin with him), with the various scan photos and the funeral order of service. In Max’s honour I completed the Couch to 5k Challenge in the summer, and my wonderfully generous friends and family donated a total of £680 for the SANDS charity – who had funded the suite where I had given birth. It was good to focus on this at the time, but in hindsight I think I should have focussed more on how I felt about losing him.

We both only took about a week off work – looking back now that was far too short. We just tried to keep ourselves busy and await the ALICE bereavement appointment at the hospital, which might have given us answers. It didn’t, more tests and scans, and still nothing. It was “just one of those things”.. and “no reason why we shouldn’t try again”.

In July we had a family holiday and decided to try again, I really wanted to be pregnant by the time the baby I had lost was due. To my amazement we got pregnant again straight away, baby was due on the 4th April – so 11 days before the year anniversary of losing our son. I kept telling myself this time would be different, but didn’t enjoy a single day of the pregnancy, continuously paranoid. I was making sure I was keep healthy, no caffeine, plenty of exercise, cutting out all danger foods etc. I had 7 week scan, and all was well – baby was in the right place and had a heart beat. Again we had the harmony test, again all the results were fine, and we were over the moon to be having a girl.

On Thursday 20th September we had a successful 12 week scan, then at 8:30am the following morning I started bleeding. In what felt like de-ja-vu, I drove myself to A&E and sat sobbing on my own until someone came to see me. Tests were then done again, infection levels were up, but bedside scan showed our baby girl was fine. I asked to stay the night, just in case, and the bleeding suddenly increased at about 3am. Over the following days the bleeding continued and infection levels rose. I wasn’t in pain and had no temperature etc, so various Drs told me to keep positive. Then on the Monday morning I called my husband telling him to come straight to the ward, as I was having contractions. However, they stopped and we prayed it was a false alarm. We had a detailed scan and saw our baby girl wriggling around – they told us this was great, and I hoped it was, but still felt that we were losing her, and it was a simply a matter of time. I was just feeling the same way I was when we lost Max.

My husband went home, to make sure our son was looked after, me reassuring him that I was fine, and I would see him the following day. Then at 8am the following morning my contractions started again, this time stronger and more painful. This was my third labour and I knew what was happening. A lovely lady from the bed opposite came to help me – we had grown close over the last five days, as the Drs were on their rounds and I was waiting to be seen. The contractions quickly got stronger and were every two minutes. I knew there was no point calling my husband to join me, my beautiful baby girl was coming. The Drs arrived and told me to “hop up on the bed” so they could check what was happening. I shouted that I was giving birth, but I know by the look on their faces they didn’t believe me – it was just by chance they were there – as two minutes later I gave birth to my sleeping little girl that I had hoped for and dreamed of. She arrived two days before the son we lost in April was due.

There was then chaos – this had never happened on this ward (hospital policy put me on a ward that was gynaecology and gastro, as I was too early in the pregnancy to go to the maternity ward – the hospital had recently lost its dedicated gynae ward ), they didn’t have the right equipment, or drugs, even the nurses had to use their phone lights to help as I was examined down below. Luckily, there was an amazing nurse called Laura, who had endured a miscarriage, and held my hand through out, she was my absolute rock. I never thought I would give birth behind a curtain, with five other sick women listening to my screams, whilst they recovered from various illnesses. A form was given to me two minutes after giving birth, signing that I would organised my own funeral and I wanted an autopsy. I made one of the Drs call my husband, then my sister, and tell them what had happened. All I wanted was my husband to come and hold me.

We were moved to a private room, my little girl still lying on the bed, whilst they waited for me to pass the placenta. My husband arrived in lightning speed, and I explained to him what happened. Again, we were both beyond devastated, again I felt empty, and again I felt like my world had fallen apart. For the second time in five months we met a sleeping baby,  our Isabella, and had her blessed by a priest. She was so little, our beautiful girl that would have been a wonderful sister for my son.

This time I had a general anaesthetic, for what is termed a D&C, to make sure I didn’t become iller. This was the first time I had a general, and woke up thinking I had dreamt the whole nightmare, I couldn’t – and still can’t – comprehend that we have lost two beautiful souls this year.  We are yet again awaiting results and planning a cremation. This time I need some more time to heal – physically, emotionally and mentally, luckily my boss has been amazing, very supportive and told me to take all the time I need. And I have no idea what the future holds. I long for a sibling for our boy, I know how much love he – and us – have to give, but know this is now a very very unlikely. I don’t understand how people endure multiple miscarriages, one woman in a forum I now belong to having lost 16 little angels before she had a healthy baby.

On the 31st October, after a request from the ward Matron, I am going to have a meeting with the divisional head of nursing, to discuss what they should include on the ward to make this horrific experience even remotely bearable for other parents – setting up a special room, like they have in the delivery suite. I know this was effect me, especially going back to the ward where it all happened, but if there is anything positive I can get from my experience, and help other parents to be, then that is something I want to deal with. I must say the staff were amazing both times, so much care and did all they could. However, the hospital policy on where to put first trimester mums, and the care they receive, needs to be reviewed from further up the hospital chains I really hope I can effect some change.

Today is also #worldmentalhealthday, and I have now had my first ever counselling session, to try and wrap my head and heart around what I am feeling, an another reason I wanted to publish this blog this poignant week. I will see how this counselling goes, and maybe focus on it in my next blog.

Two weeks on, I still feel guilty when I laugh, or when I forgot what has happened this year – I really can’t wait for 2018 to be over. There will forever be two of my puzzle pieces missing, but Max and Isabella will live in my heart and mind until they day I die. I try to remain positive and happy for friends who are expecting, but each time a new one pregnancy is announced or a new baby is born, it stabs at my fractured heart a little. I will always feel that we aren’t complete as a family. I will always never be able to stay long in the spare room that was meant to be a nursery this year. I will always feel that I have let my husband down, losing two of his beautiful children.

I would like to finish by saying without the support of my husband, family and certain friends (you know who you are!), this would have been so much harder, I am so grateful to have them around me.

Finally, if you see on a friends Facebook a picture of a little light burning on the 15th October, send them a virtual hug, their pain is indescribable, and will sadly last forever.