Month: October 2019

There is no denying that when your baby dies the likelihood is you will loose friends, I’m yet to find someone who hasn’t so apologies if I’m wrong in this statement. I don’t want to dwell too much on the negative because I find it has a habit of bringing you down quite quickly but I realise now that the friends I lost were in fact not real friends. Some people just stopped. They stopped texting me and some who meant a lot to me I never saw again and now it has been years. I don’t miss those people, I feel it reflects badly on them and perhaps shows their level of understanding. Perhaps if they they had realised that although I felt broken a simple ‘how are you’ would of sufficed. I didn’t need a lot I just needed people to be there even if you don’t know what to say showing up is better than doing nothing at all. At the time they made me feel ashamed of what had happened to me. They made me doubt myself and there is no going back from making someone feel like that.

Now that is out the way I can talk about all the real people in my life, the friends I had before Betty died and the friends I have made in the last 4 years have all been wonderful. They have been my rocks – along with my family they have held me up and kept me going. We have cried together but most importantly we continue to laugh and have fun. I no longer feel guilt to enjoy myself and have fun and when I am with them I know how much Betty means to them, if I want to talk about her we do and if she doesn’t come into our conversation it doesn’t matter because just knowing that she isn’t my sad secret is the best thing.

The biggest thing was that my friends didn’t change. They didn’t change how they acted they were the same with me, I guess it just highlighted to me that they had always been good people. Not changing, it was all I wanted, I didn’t want them to treat me differently, they listened if I needed it and that was the same as before she died. They knew they couldn’t understand fully how I felt, but they felt Betty’s loss too and they cared and it showed.

It wasn’t just the closest people, it was all the other people who I knew, some well and some not so. Some showed up and left gorgeous home cooked meals on our door step, some sent thoughtful gifts with beautiful heartfelt cards. None of them knew what to do I know they didn’t, I wouldn’t of done, they were all probably just as shocked as we were.

Archie had been at Primary school where he had started in Reception for about 6 weeks when Betty was born, we had barely forged any friendships, just ‘hellos’ in the corridors, obviously everyone knew I was pregnant there were only a few of us that were and I dreaded going back to the school run empty handed, I thought I would be ostracised. How wrong I was, one group of mummies who are now some of my closest friends took me under their wings and treated me in a way anyone could hope to be treated under the circumstances. There is no handbook for this stuff but I should ask them all to write one because somehow they just knew how to act, what to say. Most importantly rather than ignore what had happened, even tho at this point they didn’t know me that well and it would of been so easy to do they told me they were sorry in the playground, they invited me for coffees, they asked me about Betty. This was just so special and if you have lost a baby you will understand that. As we arrived home from hospital in the days following her death they arranged for a huge bouquet to be sent to us I will never forget the card it said ‘from all your friends at Avonwood’, I remember crying when they arrived because it just showed how much they cared, I barely knew them but they were telling me I was their friend and we were part of something. One of the mums had also had a baby, a girl a couple of weeks before, again I didn’t know her that well, I dreaded seeing her and the first school run I did on my own she was the first person I bumped into. I thought I would never be able to be friends with her (obviously I have told her this story) but she went on to be such a close friend and still is. I found it hard seeing her baby, but at the same time it wasn’t mine. It was different and she would always come round and see me and we would meet up and in the end seeing her baby became so much easier and I was ok with it.

Three of my best friends came to see Betty in hospital – I still don’t remember that day properly, I don’t know if I text them or called them on the phone but somehow they turned up together and they saw her and I really wanted that. I know they would of been worried about what it would be like, I don’t know if they have ever seen a dead body let alone that of a baby. But they came and I will always cherish the fact they were and still are my best friends. Not many people got to see her so to know that we share that is so special to me. They were amazing before, we have had so many adventures as we have been friends since Archie was born and we all have our eldest children who are the same age, but after this they somehow just got the situation and again I think it’s because they didn’t shy away from what had happened. They acknowledged it and still do. They ask me if I’m ok, they talk about her and that is the best thing anyone can do in my opinion. Although this changed me as a person it didn’t alter these friendships, any of them.

Even now when I speak to another parent who’s child has died I worry if I’ve said the right thing, I worry if I’m wording things right, if I have said anything that could upset them and it’s happened to me so I should have the words. I try to think of my own encounters with people and friends I always ask myself would I be happy if I read this or heard this. It’s not easy but it’s better to say something than just ignore it completely.

Death can be isolating, but it shouldn’t be and it doesn’t have to be. As much as some days especially in the beginning you want to shut the world out, you should in fact let it in. If you have the right people around you wonderful things happen. It’s important to be mindful of someone who has experienced something traumatic, it may not be baby loss, the death of a relative, an injury, they may have depression or had a breakdown in a relationship. It could be anything, anything that has an impact on another persons mental health. That person may turn down your offer of going for coffee, or they may arrange it and then cancel on you. The sign of a good friend is one who doesn’t give up. There have been times when I have simply not felt I could do things and my friends still invited me the next time and that I feel is very important.

It’s not just about receiving gifts but the ones I have received have really meant a lot, however a text can equally mean just as much, but it is nice that everyone shows their love and support in different ways. Some of my friends have given me the most beautiful keepsakes that I will always cherish. One of my friends from secondary school who was the only person I knew of who had experienced baby loss at the time turned up on my door step – she was the first person I thought of when Betty died but I didn’t know if I should contact her, believe it or not I was actually worried I would upset her hearing my news. She showed up, she brought me a gorgeous pebble with Betty’s name and date of birth and the words in her card just showed me how much she understood. We were close at school and then lost touch but now I consider her to be one of my best friends and I will forever be thankful that she is there by my side even if I do live on an island now!

I have made online friendships since loosing Betty, some are other mums who have been through a similar thing to me, some are just people I have met through my little squares on Instagram but I message most days and I very much class them as my friends. They are understanding and so kind and caring. Social media has its negative points but there is also so much good to it. Initially when Betty died I felt very alone as I didn’t use instagram back then and I didn’t know where to look for other people like me, but as time moved on I found my people and I love that everyone is there for each other.

I have to point out that when I say ‘I felt alone’ it was not because of anyone of my friends it was how I felt internally, as I’ve explained in this blog post my friends were fantastic, but I also felt I needed to find people like me, I needed proof that I was going to be ok, I needed to know someone else who had been through this had survived it. No one other than someone who has been through it can reassure you of that.

Since moving to the Isle of Wight I have met a handful of people who I now call my ‘friends’ but those people know about Betty, it’s very daunting telling someone new such an important life event thankfully I have Instagram so most of them have been able to see our story before I had to explain it in person which is always a help! They have all showed me so much support and love in their different ways and I am very lucky for that.

I owe so much to all my friends, they shone a light when all I could see was dark and above all they just showed up, wether that was in the physical sense or just in my text messages, on my voicemail. The greatest gift you can give anyone is kindness, to me the second greatest are these friendships. I can never repay them for what they have done for me but hopefully they will read this (I know they will) and know they truly mean the world to me.

Thank you for your kindness wonder women I love you all.

Jen x

Despair – definition: the complete loss or absence of hope.

After the initial shock of the news of what had happened came the despair. In fact despair mixed with fraught and irrational feelings. At the start I wanted her to be born and see if we could save her, once she arrived I wanted time to turn back time so I could do something differently. Afterwards I always struggled to find my place in amongst the charities and people doing amazing and wonderful things for their babies. My daughter was stillborn but I didn’t notice a reduction in movements that I could recall, she didn’t have a medical condition which contributed to her death in fact she didn’t have anything wrong with her at all. There was no cause of death found.

At her funeral we asked people to give a monetary donation should they wish rather than flowers to SPRING which was the charity that funded the bereavement suite we stayed in at the hospital. As much I didn’t like the hospital as a whole for what had happened I was very thankful to have a room away from the main maternity unit to have Betty and then spend time with her. I know many do not have these facilities at the hospitals where their babies were born.

Once home, despair came in a different form. Firstly, telling Archie. It was such a sad moment in my life, to tell my little boy that his sister couldn’t come home with us and that she was now living amongst the stars. To this day he has not seen or ever asked to see a picture of his sister. I have to be honest I was too scared to show him, I worried so much that he would take it badly. If he had asked I would of shown him but he never did. This year on her birthday I hope that we will show him and Vinnie her picture. He is already counting down the days to her birthday and now he is 8 I feel it is time.

One of the worst things imminently after her death was deciding if we wanted her to have a post mortem, the thought her little body would essentially be taken apart and dissected made me feel ill. But if we didn’t do it we would forever wonder ‘why’ which is ironic as it was ‘inconclusive’ so we will infact still always wonder this. Another thing which I felt prolonged our suffering was the length of time it took to receive these results. She was born on the 17th October 2015 and the PM was done promptly that week in Southampton, but we waited until the end of January 2016 to have a meeting to discuss the findings. We were told time was needed for certain tissue samples to culture and Christmas and New Year also held up the process but I just felt this was far too long. The wait was agonising, as if you aren’t going over it in your head enough, what you did wrong, the wait, the wait was cruel and unessarary in my opinion.

One of the absolute worst encounters in the formal process of Betty’s death was receiving those results. We had most harrowing experience with the rudest consultant who may have had intelligence but his compassion and common sense was that of a flea and had I been more mentally unstable that day and didn’t have my families support I genuinely think I would of thought about committing suicide. He was so rude, he was dismissive of our child and the medical information he was supposed to be explaining and he ended our meeting telling me that I have a nice family and a son I should be grateful for them and go home to them and ‘get on with things’. If only I had thought to ask him which one of his children he would be happy to loose in light of the fact he had others anyway! It was one of my lowest points after losing Betty.

As she died under the hospitals care a serious incident report was also conducted. We got the results of this in February sometime I don’t remember the date. For months in my despair I trawled medical journals and guidelines, I spoke to a few other loss parents who gave me further knowledge of the questions I should be asking. I was desperately searching for answers. My research ended with me finding out that there was a test missing and the way we found out felt underhand and I was very paranoid as a result. I asked the medical professionals who were apparently doing a ‘through investigation’ what the result of this test was at our meeting, it may have been a key indicator in our case and it was not done. A panel of experts allegedly sat round a table and went through our case step by step, doctors, consultants and experts, yet none of them asked each other for the results of this tests or choose to highlight it had not been done. I am certain they would of talked about it but I also think they decided they would not write it into their findings in the hope that having no medical knowledge we would be none the wiser. Little did they know the journalist in me was busy researching and looking for answers. However, this really knocked me and even now I can’t think or talk about this much as it still feels like a conspiracy but I often wonder if it is despair that makes me feel like this. Maybe it was just a genuine error. But to me there can’t have been that many babies that died that day so in theory they should have been able to go through their guidelines and check list methodically and accurately. What it really highlighted I think, was that they were too busy dealing with ‘live babies’ they were understaffed and over populated the night I went in which is why we waited in the first place.

When I asked them about the test the ‘risk manager’ went to the page of results and there was a big circle on the page where this result would/should be. Myself, Scott and my dad all saw it, she promptly closed the page and said she would have to go back to the unit and ask them about this! It left me paranoid and deeply disturbed. A few weeks later we got a letter apologising and letting us know after investigating ‘the test was omitted in error’. It may have been negative but either way we were denied the knowledge for this careless error. There are a lot of blood tests done after you have a stillborn baby, it felt odd to me that every other test was done on the numerous tubes of blood they took from me, but this one, this particular one was not there.

The consultant thought it would be helpful to provide the analogy that if they had tried to get her out in time if they had noticed a deterioration then there is no guaranteeing what condition she would of been in, she would likely of been brain damaged. There is no consolation in this situation and I feel comments like this to bereaved parents are both unnecessary and mentally scaring.

So much of my despair and mental torture came from health care professionals, it appeared to me and still does from other stories of loss that I read that there is a serious lack of education and compassion in the process of baby death. I know the situation is harrowing for all involved, and I don’t like to criticise midwives, doctors or consultants as they do such a wonderful job everyday at bringing babies alive and healthy into this world. But there are people like me who seemingly fall through the cracks in the system and drown in the unorthodox comments, the substandard treatment and the backward way these things are investigated and conducted all whilst trying to process the trauma of what has just happened. I hope that one day maybe I can make a difference to this. But not now, not over the last 4 years, it’s still too raw, too sad and it damaged me.

For the last 4 years since Betty died I have been concentrating on having another child which I will talk about in tomorrow’s blog post but also re-building mine, Scott and Archie’s family unit. Our little world previously untouched by grief and terror had to be restructured and rearranged all whilst trying to continue with all of everyday ‘life’ that carries on around you. The biggest being paying the bills, going to school, going to work, keeping a house and trying to keep sane.

(the only picture we have as a family of 4 with Betty in my tummy)

It has taken everything I have ever had to keep going. Everyday I survived I felt stronger, some days now I feel invincible, I know surviving this has made me more resilient than I could ever imagine. Some days I feel like wonder woman, other days I feel like a limp leaf blowing frantically in the wind falling down and blowing back up, just desperately trying to find a place to ground myself, I think that is just what happens when you are going through grief and despair.

I have had to learn to compartmentalise certain aspects of what happened, especially after falling pregnant with vinnie a matter of months after Betty died. I had to let certain things go even tho I wanted so badly to fixate and pursue them but I had a new focus I had to keep this new baby alive, I had to show myself and everyone else that I could do it, that I wasn’t a complete failure and in doing this I couldn’t fight for Betty like I wish I had, wish I could of. It is my hope that one day I can better understand it all and look at the facts and decide if they were right or wrong. But I don’t know if I will ever be able to do it without bias because that raw emotion will always be there. I will always be angry with someone wether that be myself or the NHS for the death of my daughter. But in order for it not to eat me up and completely destroy me I have had to tuck those feelings away for they do not change the situation, they do not help anyone. She will always be dead now, she will always be gone and once the despair subsided I had to start learning to deal with that realisation and start to ‘accept’ (I hate that word because I am stubborn and accepting things is not in my nature) but this is where ‘hope’ came into play and that my friends I will talk about tomorrow when I tell you all about my little Vinnie.

In order to find hope I feel despair is necessary. Riding the storm of emotions is essential to get to where you are going even if you don’t know where that is at the time. Just like crying can be healing and a release, experiencing despair, fear and frustration are all natural feelings and emotions that will guide you to your next stage in your grief, these are the hardest emotions in my opinion but for me they have led to better days even tho at the time I didn’t know where I would end up.

But I am here and able to tell you all our story and for that I am so lucky.

Jen x