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.

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!

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?

Is exercise enough to improve symptoms of PCOS?

If you suffer from PCOS, the chances are that you’ve raided the internet for answers on how to help improve your symptoms. It runs almost like a spectrum, with some sufferers having problems with excess body hair, acne and of course fertility issues such as anovulation or irregular period cycles. There is often a lot of focus on weight gain and high BMI, but some sufferers have a perfectly normal BMI and may suffer from the other symptoms.

Which methods have you tried to help improve your PCOS? Before falling pregnant the first time, I attended the gym for about a year and my BMI, although already healthy, did go down a bit further. Did this kick start ovulation? Was it the fact I’d changed to brown carbs? Or was it a combination of both?

This insightful article explores the effect of resistance training on PCOS. Is exercise really enough to make a difference?

They analysed several existing studies about PCOS and resistance training, as well as aerobic exercise and concluded that many studies actually failed to account for the person’s specific diet and nutritional intake. They found that the most informative studies were those that included details about types of exercise, but also specifics about what percentage of the person’s diet consisted of protein, carbohydrates etc. For us PCOS sufferers, it would be beneficial to know what types of carbs helped, what types of protein foods helped etc so that we could try to adapt our diets accordingly.

They concluded that exercise alone was not enough and nutrition is just as important. Read the full article for further information.

The take away message really for us PCOS sufferers though is that a combination of diet and exercise (the study mentions that both aerobic and resistance are beneficial) can help improve symptoms such as insulin resistance and ovulation disruption.

Of course, with regards to falling pregnant, there is no absolute miracle worker, but it’s good to read about research being conducted as it will eventually lead to an improved understanding of this complex condition and better opportunities.

What it’s really like to face the rainbow after the storm.

For those of you who are not familiar with the term ‘Rainbow Baby’, it refers to a baby born after a previous pregnancy loss. It refers to the rainbow that arrives after the storm and it is a precious sign of hope – I know because I am having my rainbow baby.

I had the chance to interview another couple of fantastic ladies who have shared their rainbow baby stories. Rather than structured questions, I allowed these ladies to tell me their story in their words.

Rainbow story 1:

We lost our first pregnancy at 10 weeks in Feb 2017 due to a medical issue after seeing a heartbeat in an earlier scan. It completely broke us. Over the next year while I was medicated, we focused on diet and health while pin pointing an issue with my luteal phase. I had acupuncture which did help a little but ultimately coming off the medication helped me to conceive. After almost 2 years we found ourselves expecting again, just a few weeks before our fertility treatment was meant to start. Before I fell pregnant again I often panicked about experiencing loss again, worry about experiencing the heartache and nightmares that I’d suffered previously. But strangely once I was pregnant again something felt different. I was empowered by the thought that no matter what, I couldn’t change the outcome. It made me relax and accept that my first loss wasn’t my fault. That worry wasn’t going to make this pregnancy easier, but harder and less enjoyable. So, I took each day as it came, never rushing ahead, enjoying each 6 hour block as they came to me and was supported by the unique group of women who had supported me through my infertility journey. We shared coping mechanisms and leaned on each other through the difficult days. Support is very important. Because I wasn’t worrying about getting to 12 weeks, or to 20 weeks or even to give birth, just focusing on the day I found that my worry slipped away to live on the back burner. I felt huge relief. And I’ve pinched myself every single day I’ve been pregnant so far. At almost 26 weeks I feel like I’ve been given the greatest gift and I am enjoying every single moment, even the sleepless nights, the aches and pains and the pee sized bladder. I’m living my dream. We didn’t buy any baby things until we passed 20 weeks and I haven’t gone mad to buy lots of extra gadgets, all the baby needs is somewhere safe to sleep, a few things to wear, something to eat and lots of love.

Rainbow story 2:

I’m not going to lie, this pregnancy has been hard! I spent the first few weeks convinced it was going to end as per all the others. I never allowed myself to get excited, and my partner was the same.

I refused any early scans through the NHS as all previous visits to EPU had ended badly and I didn’t want to go back in the same room. I didn’t even go to the GP or book in with the midwife until I was around 9 weeks.

I went for a private scan with my miscarriage clinic instead at 6wks.

I had a subchorionic haematoma at 7wks where I lost a lot of clots and thought it was all over. There was no warning, no pain etc. It just flooded out. This meant every single time I stood up/went to the loo/had a shower etc after that I was petrified of what might happen.

I got round this by paying for a lot of private scans. I had one nearly every week. By the time I admitted to my GP I was pregnant, I was brave enough to go for an NHS scan as well.

I filled my time up with mindless games on my ipad. That was literally my saving grace. I’m surrounded by wonderful friends and work colleagues who all understand what I’ve been through and none have bombarded me with ‘baby talk’. They’ve let me do things in my own time. I’m now 26wks and am still having huge difficulties bonding/accepting that I’m having a baby in a few months. I’ve spoken to others in a similar situation and this doesn’t seem unusual and they’ve all said as soon as the baby was born they fell in love. I’m crossing everything that this is the case with me too.

The NHS has been brilliant, offering me scans whenever I want, midwife will listen for the heartbeat, I’m under specialist consultant care and will have regular scans up until birth.

Conversely, not once in all my previous miscarriages have I ever been offered any kind of counselling or help. Second class citizen when you can’t manage to carry a baby….

The more people who hear about the issues surrounding fertility/miscarriage the better.

The stories told by these ladies are so important because there are many people going through this that don’t feel comfortable speaking out. It is such a sensitive topic and one that often leaves people feeling isolated. It’s stories like these that have inspired me to think about setting up my own monthly pregnancy after loss support group – there isn’t one in my area at all and I know it’s something I would definitely have benefited from, especially in the earlier days. In fact, I would still benefit from it as the worry doesn’t end after the first trimester and I still find myself on edge at times now coming up to the third trimester. There can never be enough support.

Recovery and having the courage to try again

Pregnancy loss can leave you feeling shocked, vulnerable and alone. There’s the physical aftermath and then there’s the mental – which takes a lot longer to recover from.

I remember feeling scared when I found out as I didn’t know what came next, or how my body would react. A very low number of pregnancies end in the way that mine did, where my body gave no signs that things were amiss. How do you recover from something like that?

1) Support from family and friends.

Support is important, but in this day and age as early miscarriage is not talked about very much, the right support can be difficult to get. Open up to those around you that you feel comfortable with and they might just surprise you.

No matter what choice you make, whether it be medical management or surgery, having the support of others will be really helpful in your physical recover as you won’t feel up to doing anything physical for a while.

2) Support from professionals.
Not just the medical team, but professionals could be therapists/counsellors. The wait for NHS therapy was far too long for me to even comprehend when I needed it most, so I went private. She made me realise one very important thing:

3) Allow yourself time to grieve.

I felt as though I had no right to grieve, as my baby was not physically here. I didn’t even realise that I needed to grieve. The truth is that it’s a loss, no matter how you look at it. Baby was a part of you, no matter how short the time was and you need to grieve.

4. Allow yourself to do silly little things to make you feel better.

Retail therapy, watching a movie, having a bubble bath! Whatever it is, if it makes you feel better then do it! The weirdest thing we did for a while was build a bedroom downstairs in the living room – don’t ask what the logic was. For some reason being in a different environment helped me in my recovery and it may help you – maybe it was the step away from reality for a short time.

5. Do something to remember.

Thanks to a lovely charity, most hospitals now give lovely memory boxes, no matter when your loss occurred. This is so important as it gives significance to your baby. We built a memorial in our garden too which felt like the closure we very much needed, but that’s not for everyone. Do what’s right for you.

So…after all of that… just how do you pluck up the courage to try again?

It’s not easy! For a while you may feel there’s no point or it’s just too hard. Time really heals in this instance – give yourselves time together to recover and enjoy each other’s company before thinking about trying again. Some of you might be super keen to try again as you miss being pregnant – I was just like that! Felt like I needed to fill a void. It was important to not put too much pressure on ourselves after what we had been through. Stats helped somewhat – being told my likelihood of another missed miscarriage was super low helped a little but didn’t stop me feeling nervous when I fell pregnant again. If you need fertility treatment like I did, you’ll need the strength for it. The most important thing is to know when you are ready, look after your physical and mental health and everything else will fall into place.