Willow’s Rainbow Box

I’ve been very busy!

So in March I thought up the idea that I wanted to help women pregnant again after loss and I wanted to do this by giving comfort boxes with items to help reduce anxiety. Back then it was just an idea, a thought. I usually come up with crazy ideas that don’t seem to pull through or have legs. I’m not the most confident person – I suffer anxiety and sometimes I lack self belief so I just don’t pursue things.

This was different though. I have so much passion for this. My pregnancy with Willow was so tough on me and it’s because of my previous loss, constantly nagging me in my head. I decided I just had to give this a go and went along to see an advisor. I then had to find a team of people – another stumbling block. So I always worry about things like this – it’s sort of like when you’re a bit worried about organising a party as you worry people might not come along. I worried I wouldn’t find a group of people as passionate as I am, but the fact was I can’t make a charity on my own.

After reaching out on Social Media, I found my 6 Trustees that have joined me in creating Willow’s Rainbow Box. 6 people who wanted to make this project happen. After that I really had to stop and go – wow this is actually happening!

Fast forward to now, we have held our first AGM, created and signed a constitution. I have had meetings with midwives and other professionals. We have created a Twitter presence with #RainbowBabyHour. When I think about it I am amazed how my one idea back in March has turned into this amazing project.

It’s amazing, yes, but it also makes me sad that I was ever in the situation that led me to this idea. Not being pregnant with Willow, but the fact it was a pregnancy after loss. I think about this project and I think I am giving my lost baby a legacy. I’m giving willow a legacy as my rainbow baby, my ray of hope and I’m giving my lost baby a legacy as without them my Organisation wouldn’t exist. I feel like I’m part of something so big – helping to raise awareness and get people talking about baby loss.

I am so excited for the future of Willow’s Rainbow Box. I have chosen to not return to the working world until Willow is older, but I am in no way not working – this project is my full time job now, as well as looking after Willow. I feel so lucky to be able to do this. I never thought I wouldn’t go back to work – but the opportunity to create something new in the world that helps people and to be able to be with my daughter in the early years makes me incredibly happy.

World Maternal Mental Health Day 2019

This week is Maternal Mental Health Awareness Week and today marks Maternal Mental Health Day. Lots of organisations are coming together and celebrating this day in different ways. My blog today is about the impact of pregnancy after loss on mental health both during and after the pregnancy.

As soon as you receive the positive test – for those who haven’t experienced loss, the feelings may be of elation and joy. For those getting a positive test after they’ve had a loss, it may also conjure up feelings of anxiety and fear. For me it definitely did – for me it was a ‘here we go again’ situation where I was just filled with dread up until the 12 week scan.

I was so anxious that I was going to have another loss. There was no one to turn to – doctors brushed things off saying ‘1 in 4 pregnancies end in loss. It’s unlikely to happen again’. The fears were still real for me though and I found it hard to relax.

It’s not just me. There are so many women in the world feeling like that too – pregnancy loss leaves you feeling sceptical, uncertain and scared for the future. It’s not really something most people can accept and move on from so easily. It affects your perception of things if you fall pregnant again. For example, my initial responses were ‘I’m not buying anything for the baby until I’m in labour’ and ‘I’m never having a baby shower.’ I did go on to have a baby shower and buy things but this was due to counselling services I used (private) and general relaxation techniques, as well as writing and talking over and over again about things to just about anyone who would listen. I paid for several private scans too – never a guarantee everything was okay but it made me feel better in that moment.

As soon as I fell pregnant again, I was treated like any other pregnancy – but it didn’t feel like any other pregnancy and I wish more support had been given antenatally from an early stage to help with anxiety as I really feel it’s needed.

Having a newborn baby is hard – no one can claim it’s easy no matter who you are! However, when you’ve had a previous loss, feeling that it is hard or you’re struggling can also make you feel incredibly guilty – you should be grateful right? You shouldn’t feel any struggles. It doesn’t quite work that way and many women struggle with the guilt aspect postnatally. This is where perinatal mental health teams are so brilliant – they are fully focused on mental health issues that arise in and after pregnancy. Services are stretched though but the world needs more services like these! The main message is that it is okay to find things hard – it doesn’t mean you’re ungrateful for your baby. Everyone finds difficulties when they’ve just had a baby.

The organisation I’ve set up aims to help reduce anxiety in women pregnant again after loss. I’m so passionate about this because had I had something like what my organisation will be doing, it would have really helped me. Okay so we can’t cure the anxiety, but we can help make things a little more bearable. It doesn’t matter when you lost your baby, whether you were 7 weeks pregnant or 40 weeks pregnant. A loss is a loss and any type of loss will affect a person.

The face behind the blogger

I’ve been writing this blog since August 2018 and I wanted to re-visit why I started the blog and basically reveal a bit about myself.

My name is Amneet, mum to beautiful rainbow baby Willow. In September 2017 my life changed when I had a missed miscarriage. My husband and I had been trying for over 2 years to fall pregnant and then we did naturally! At 6 weeks we had an emergency scan as I had some shoulder pain so they wanted to check to location of the pregnancy – all good, in the uterus with a lovely beating heart.

We went for a private scan at 8 weeks and we were told there was no heartbeat. I had heard of missed miscarriages but thought they were so rare and therefore just couldn’t believe it had happened to me. It was a devastating time, but I was well looked after by the hospital and we even received a 4Louis memory box and attended a memorial service for our baby. I felt respected, even though it was a loss before 12 weeks. There are many women I’ve spoken to who haven’t been treated with the same respect by their hospitals. Some women have even just been brushed off as the ‘1 in 4’ or told miscarriage is so common and have been subsequently made to feel like their loss isn’t significant. I’m glad to say my hospital in Newcastle didn’t treat me in that way.

I had to have fertility treatment after that pregnancy as my polycystic ovaries were causing me ovulation problems. We fell pregnant on the second cycle of Clomid issued by the Centre for Life. It’s amazing how the doctor just knew Clomid would work for us and kept me feeling positive.

The pregnancy was so full of anxiety – mostly in the first 12 weeks but then because of my previous loss, the anxiety carried on the whole way through. I went for counselling for some time, I tried to treat myself each week. I tried to distract myself, think positively. It was so difficult and there was no where I could really turn to and say ‘this is really hard because I just feel I’m going to lose my baby again.’

It got to August 2018, a year on from when I fell pregnant with my loss. I hadn’t spoken about it openly really – my work colleagues knew and direct family and close friends, but no one else. I felt I needed to talk and then something clicked – it’s good to talk. Talking about something opens it up for other people who have experienced the same. So many people had experienced miscarriage or fertility issues and didn’t feel they could talk about it. My blog has become a voice for those people.

I took things further when I decided I wanted to start up a Support Group in my area for pregnancy loss and pregnancy after loss. There were a couple around for pregnancy loss but not much for people pregnant again after loss and feeling anxious. That was perhaps for me the time I needed the most support. My group has been running since September 2018 through NCT Charity.

I felt I could do more. I wanted to do more. I was so grateful for my miracle born in November 2018 and sad my pregnancy had been filled with anxiety the whole way through. I thought about the things that helped me and then Willow’s Rainbow Box was born. I decided I wanted to start a charity giving comfort gift boxes to women pregnant again after loss, with the aim to help reduce anxiety.

That’s my life now – starting up a charity, searching for part time work and looking after my beautiful daughter with my husband – he works so hard to make any of this possible and supports me so much in my ventures.

We get one life – I believe in doing something good and leaving a mark on the world. If I can make good out of such a dark experience and I can help other people, I’m happy.

I have exciting plans!

A couple of months ago I decided I was going to try and launch my own business. The keyword here is ‘try’. Business isn’t always straight forward and there are ups, downs and obstacles that can get in the way. Unfortunately, CE testing was my biggest obstacle as it meant I couldn’t really launch the true business I had wished to. Of course, I could have still made my sensory boxes but they would have lacked the creativity that I wanted and I just wasn’t happy with what the end product was going to be. If I can’t believe in my own product then it’s pretty hard to sell!

However, Willow’s Wonder Box and the whole idea of me bringing something in to this world is not over. I’ve decided to go in a new direction and start up a non for profit project giving gift boxes to women who are pregnant again following loss – with the aim to help reduce the anxiety felt in a rainbow pregnancy and make things a bit more bearable. My aim is to provide these women with comfort at a time when everything is out of your control. Going through a new pregnancy after a previous loss, whether it was an early loss right through to infant death, is an extremely challenging time. My support group that I run monthly aims to help not only women who have had miscarriages, but also those who are pregnant after loss. If I had been able to access support during my pregnancy it would have really helped and I want to give others the chance to have this support. The idea of the boxes for me just made sense. I have the support of Kicks Count charity who have a similar project rainbow scheme in place as well and they are happy to support me.

I’ll keep people up to date with my progress. It’s a big project and it will take a lot of time to get into place but I’m very excited. I’m meeting with North Tyneside VODA soon who will help me to work out how to make my project a reality. Wish me luck!

The things no one tells you

My daughter is almost 3 weeks old today. I’ve been writing a post about midwife appreciation which I will post soon but I felt I needed to write this one first.

When I lost the baby last year it was a horrible, awful time and considering that loss combined with how long we were trying for, I vowed I would never struggle or complain or find anything difficult if I finally had the chance to have a baby.

I’ve come to realise how naive that thought was, but even though it is naive I still feel an essence of guilt. To be boldly honest, having a newborn is one of the hardest experiences I’ve ever faced! The sleep deprivation plus the constant back and forth we have had with the hospital, the struggles of feeding and trying to live up to my own expectations of motherhood. My husband going back to work and the challenges that brings along – realising a simple trip to the toilet isn’t exactly simple anymore. Not sleeping in the same room as your husband and taking it in shifts so you can both get some sort of sleep. A house that won’t stay clean as there simply isn’t time. Cheering when you have time to have a shower to wash off any vomit. Battling with different health professionals on how best to prepare a bottle. Persevering through breast feeding even though you’re only expressing 15ml after 40 minutes of hard work expressing.

I feel awful and guilty for feeling all of this because after all I have my baby and I shouldn’t feel these struggles right? Well I’ve come to realise it’s a perfectly normal thing to feel. Yes we struggled to have our baby and went to hell and back with the miscarriage and now we are finally here but that doesn’t mean it’ll be an easy ride and despite all of the above difficulties that we now face, every single one of them is worth it when I look at the perfect little human that we created. I’ve been told that accepting being a new parent is difficult is not a sign of weakness or a sign of lack of gratitude – it’s just part of the journey and I am not superman! So for those of you still struggling on your journey to motherhood, don’t feel guilty for feeling any of this when you get there, it’s normal and after what we have been through, a bit of normal is good.

MEN-tal health and miscarriage – are fathers’ mental health needs being met?

When a pregnancy loss occurs, there is often a lot of focus on the mother’s feelings and making sure that the mother is doing okay. People can sometimes forget that there is another party usually involved –  the father.

I’ll discuss my personal experience of this first. The miscarriage was heart breaking for both of us, but when we met with the doctors helping us at the time, much of the eye contact was with me rather than my husband. I also noticed that in general, people would ask how I was doing and my husband was very much the ‘messenger’ passing on people’s thoughts to me. His needs and feelings didn’t seem to be considered as much as mine. Why was it like that? He didn’t have to endure the physical challenges of a miscarriage, but mentally the experience was just as devastating for him as it was for me.

A Systematic Review of literature in 2017 surrounding the impact of pregnancy loss on men’s health showed that there was a tendency for men to have less intense levels of negative mental health outcomes than women, but they were more likely to turn to alcohol or other undesirable behaviours as coping mechanisms. This is not a favourable outcome – to me it looks like the intensity of negative mental health for the men may still be there, but that due to lack of mental health support, they’ve transformed their grief into undesirable behaviours and therefore it  only appears that they are doing okay. Studies also showed that men put themselves forward as the ‘supporter’ to the mother, rather than recognising their own loss – could this be due to social attitudes and stereotypical thinking about men? Is this the role that men perceive they should take in these situations? Men may also feel like their pain is overlooked compared to the woman.

Studies have also shown that men feel almost equal amounts of grief as their partner. They like to see themselves as fathers and do visualise their futures with baby and the pain of having that taken away is very real. It’s reported in this article that the duration of grief is less – again, is this reality or just down to men being less open or turning to certain behaviours in order to cope?

I’ve recently spoken to several men who have gone through miscarriages and the responses I’ve received do match well to feelings of being a ‘supporter’ and feelings that their grief and mental health perhaps hasn’t been considered as much as their partner’s. Some men have taken an acceptance approach to the miscarriage, looking at it from a more clinical perspective – rationalising it in this way was perhaps how they coped. One thing for certain is that there is an overwhelming feeling here of lack of support for men, whether it be from employers, professional bodies or even their partners. See their responses below:

Where do we go from here? It’s clear from the men’s responses above that even in the current day, men do need more support and there does seem to be this perception that the woman’s pain is more significant than the man’s. If we want this to change, professional bodies, hospitals, employers or anyone involved in the care of a couple after miscarriage need to put more consideration into the mental health of both parts of the couple equally. There are organisations out there, but they need more awareness so that men know who they can turn to if they are involved in a miscarriage.

Tommy’s charity have looked into this issue and have suggested we need to break the silence on men’s grief in miscarriage. The Miscarriage Association has also published a leaflet for men trying to cope with miscarriage. Back in 2017, the BBC drew attention to this issue and how more needs to be available for men. It’s down to charities to get their word out and down to bloggers and the media to also help improve the situation and hopefully one day, the majority of men will have more options for support and feel as supported as their partners.

A huge thank you to the men who contributed to this blog post.

Baby Loss Awareness Week 2018

October 9th-15th is Baby Loss Awareness Week. This time last year, I did not have the strength to even acknowledge this week. I was still in shock and at the stage where I didn’t want people to know what we had been through and also I didn’t feel like it was socially acceptable to tell people what we’d been through. The truth is that it was a lonely time, made even lonelier by the ‘unwritten rule’ that early miscarriage isn’t openly discussed.

I am so glad times are changing. The world is changing its views about everything – remember the days when talking openly about the topics such as LGBT was frowned upon? People feel more able to speak up about a lot of things now and the silence on miscarriage is slowly being broken. This is great because it means those who need support can get support from others who have been through the same situation and they know it’s nothing to be ashamed of.  The statistic is 1 in 4 pregnancies end in miscarriage-  that is a lot, but I never felt more alone when I went through mine. My story is here for those who wish to read it.

So what is happening this week? Over 60 charities have joined together to raise awareness of baby loss and to offer support to those suffering. There is a global ‘wave of light’ where people all over the world are invited to light a candle on 15th October to remember all babies lost. People are talking with the media and opening up about their own experiences, as well as having important discussions regarding things like the sale of home dopplers and the importance of kick counting.  Pink and blue ribbon displays are taking place in lots of public places throughout the week. Check out this page for more information on events going on in the UK this week.

My Social Media pages this week will show dedication to raising awareness and will highlight some of the great things being done around the country. I am collecting donations for Tommy’s Charity on my Facebook .

Through NCT North Tyneside, I am continuing to run a new support group for pregnancy loss and pregnancy after loss – the next meeting is 18th October and details can be found here.

I recently asked people via different Social Media platforms to help me with my post this week by sending a quote, message of hope/support or a story through and the response has been lovely. I have collaborated all of these messages into the video below – a video of support for those of you going through a tough time with baby loss right now or who have been through a tough time previously.

Just to end this post, a poem of hope and support:

Right now it feels like a clock has stopped,
The days are long and all hope has dropped.
You envy blooming friends who are all full of glow,
Or that parent in the supermarket with babies in tow.

One day you had hopes, built plans and dreams,
The next day your world had burst at the seams.
It’s hard to talk to people about how you are feeling,
You know that your loss will leave them speechless and reeling.

Time does heal and you will become stronger,
You won’t feel so bitter and sad for much longer.
You’ll never forget and there’s times you’ll feel low,
One day you’ll have the strength to try for that rainbow.

 

 

 

To baby shower or not to baby shower? The struggles of pregnancy after loss.

I’m still trying to get my head around the fact that exactly one year ago yesterday, I had an ERPC for the baby we lost at 8 weeks gestation. Fast forward a year and I am 32 weeks pregnant, constantly counting my chickens and about to have a baby shower.

When I fell pregnant again, these are some of the things that went through my head which may be different to how a woman would feel if she had never been through a loss:

Throughout the whole pregnancy I’ve felt like I’ve been holding my breath – it’s a strange feeling you can’t really comprehend unless you’ve been through a similar experience. It has made me extra vigilant this time around, double checking everything, counting my kick sessions religiously and just analysing every day as it comes. My thoughts above were very much to do with a fear of planning ahead and a fear of the unknown – I didn’t want to plan and connecting with this pregnancy has been very difficult.

How then, at 32 weeks, did I manage to get a full nursery sorted, have a baby shower and let everyone know about the pregnancy early on? What gave me that strength? All I can think is that as time went on, I got more confident about each milestone. I got to 12 weeks, then the 20 week scan, then viability at 24 weeks, now I see people due at the same time as me having their babies and the babies thriving. I decided if I didn’t celebrate my pregnancy and my baby then when she arrives I would regret having spent the last 9 months in fear. You can’t ever guarantee what’s going to happen in a pregnancy until that baby is in your arms so every lady who buys something or has a baby shower or tells someone is taking the same leap of faith and if others can do it then why shouldn’t I?

For many women who have been through previous loss, the subsequent pregnancy is really hard. Connecting or feeling that it is ‘real’ is difficult. For me, having things like the baby shower and the nursery are reminders to me that something real is happening and have helped me develop a bond with my baby that otherwise would have been difficult.

If you need support in your pregnancy following loss, speak to charities like Tommy’s who have helped me through and look out for local support groups – I’ve just set one up in Newcastle and North Tyneside through NCT. You’re not alone!

The 12 week rule – are we just breeding more loneliness?

As far back as I can remember, it has been the social norm to not announce a pregnancy before 12 weeks and this has been largely due to the statistics that of the 1 in 4 pregnancies that end in miscarriage, 85% of them end before 12 weeks. Given these stats, it has led to a lot of people deciding to wait until the ‘safe’ period before announcing pregnancy.

I do understand why many people choose to follow this rule, but it has to be asked, is this rule fuelling the taboo that we are trying to break around early miscarriage?

Above I have highlighted a few of the pros of sticking to the ’12 week rule’ and the cons of sticking to the rule.

In our first pregnancy where we did miscarry, we did tell a few people before 12 weeks. We were excited, first time parents and we wanted to share our news with others. When things did go wrong, I felt grateful for the support around me that I wouldn’t have had if we had kept quiet about the pregnancy. However, I did also feel embarrassment, having to tell people that my good news wasn’t happening anymore. I can see from both sides on this ’12 week rule’ but I lean more in favour of going against it, as I had the support of my family, friends and employer because I had been open about it.

Being open about things doesn’t necessarily mean you have to rush to announce it to the world on Social Media (although feel free to do so if you wish to) but there is a real benefit to telling at least one supportive person when you initially fall pregnant so that if anything did go wrong, you’ll have that much needed support.

I’ve spoken to people who have followed this rule completely and have unfortunately gone on to have things go wrong. The main feelings are of loneliness, isolation, the feeling of having to bottle things up because no one knew. Also, the feeling that because it happened before 12 weeks, there isn’t a right to grieve because maybe they ‘shouldn’t have got so attached’ and the pregnancy isn’t as real as one that is further along. The truth is, you have every right to grieve. Just because it ended before 12 weeks doesn’t make the pregnancy any less real – you become a parent in your mind as soon as you see that positive pregnancy test. Telling others before 12 weeks is nothing to be ashamed about and doesn’t mean something will go wrong – it just means you will have support around you if you did need it. Also, let’s face it, the first 12 weeks of pregnancy are tough with sickness and everything else so having someone to lean on may be really helpful!

It all comes down to personal choice of course and as highlighted above, there are many valid reasons why people still choose to stick to the rule, but it really is worth considering your support network should the unthinkable happen and if this 12 weeks of silence is really worth it.

For further support if you do go through a pregnancy loss, please refer to charities such as Tommy’s or Miscarriage Association.

Early Pregnancy Private Scans – Yes or No?

Unless you have conceived a baby through fertility treatments such as IVF/ICSI, you are most likely to have your first pregnancy scan at 12 weeks. For many women, especially those who have experienced previous loss, this is a long and anxious wait.

Today I am going to discuss pregnancy private scans. These are scans that you can pay for at any time during pregnancy with many private clinics and they are especially popular in the first trimester. However, are they really worth it?

I conducted a poll on Instagram asking how many are in favour of these scans and the results showed 33% in favour and 67% not in favour. Of course, this was just a small sample so it’s important not to jump to any certain conclusions, but the results do show a clear sway towards people not wishing to have these scans. So why exactly might it be that they appear to have a poor rep?

I’ve been looking at some of the stories out there – this one in particular. This couple had a private scan at 6 weeks and were told by the Sonographer that the baby had died and they’d had a missed miscarriage. For anyone, this is devastating news and a lot to come to terms with. When they had a second scan which was given by the NHS, they found out their baby was actually still alive. They could have saved a lot of stress and heart ache had they not gone to the private scan.

It’s easy to dismiss private scans after stories like that, but it’s also important to consider how early the couple had the scan. Perhaps clinics could introduce scans from 8+ weeks instead, when there’s more to see and the pregnancy should be clearer. At 6 weeks, the embryo is still so small and things may still be unclear, which leads to mistakes.

Other sources suggest the trend of private scans is getting bigger and that could be concerning not only due to how much couples are spending, but also due to the fact that there’s no real testing on prolonged scanning or the amount of scans and how it may affect the foetus. There is also no concrete evidence to say it would negatively impact the foetus either.

Apart from scanning in early pregnancy with a private clinic, many couples opt to have the gender scans to determine their baby’s sex between 16 and 20 weeks. Some couples also choose to have 4D scans much later in their pregnancies to see their baby developing. The pros about these scans are that they can help a lot of parents to bond with their unborn baby and they can add extra reassurance, which is particularly helpful for anyone suffering anxiety or anyone worried due to previous loss. This was particularly true for this lady who spent over £2K on private scans to reduce her fears and anxieties. This poll shows favourably towards private scanning and the article emphasises how good the scans are for bonding.

I personally have different experiences of these scans. The clinic I went to where they diagnosed my missed miscarriage was not, in my opinion, equipped to give bad news. I think it’s important if you do go for these scans to find a clinic you feel comfortable with and not base your decision necessarily on price. During my current pregnancy we went for around 3 private scans with a completely different clinic and due to the clinic staff being so fantastic and sensitive with me, I was willing to travel an hour to get there. The scans were good for me and worth every penny as extra reassurance that baby was doing okay, but now at 27 weeks I don’t feel the need to have anymore private scans as I know if I need reassurance then the NHS will be there for me at this stage.

You’ve seen the arguments for and the arguments against, so my question to you is: early private pregnancy scans – yay or nay?