This blog post is part of a series of blog posts about navigating pregnancy after loss – you can read the introduction, and follow links to the other posts in this series here.
Depending on the circumstances of your loss, some aspects of your medical care may be different. Our experience was a pregnancy after loss following both a full term stillbirth and an early miscarriage, so my thoughts will generally follow that scenario.
EMPOWER YOURSELF WITH TRUSTED SOURCES OF INFORMATION
It was really important that I empowered myself with knowledge – it gave me a sense of control, allowed me to balance the responsibility that felt huge, and enabled me to act with confidence when I needed to.
By utilising trusted sources of information, you will ensure that that information is consistent, up to date and accurate. This is especially important as with increasing research into baby loss – new guidelines or recommendations change frequently. I would always recommend following at least Tommys, the Baby Charity,MAMA Academy, Kicks Count, Group B Strep Support and the NHS. Based on your history, you may have other places that you go to for information.
Clouding your mind with too many sources, especially if they start to conflict each other means that you can end up in a place where you don’t feel in control or empowered. Following the above on social media, as well as getting familiar with their website is a great place to start. Avoid advice from outside the UK, as it varies from country to country. It is also important that those close to you do the same – that way, you minimise ‘old wives tales’ advice that conflict current guidelines. I share a monthly reminder of the key pregnancy health messages and campaigns, that can be found here.
The MAMA Academy Wellbeing Wallet is a great way to keep confident about key messages and prompts you for when to seek further help. I felt quite overwhelmed some times if I forgot something or didn’t feel confident in my mind. The wallet is a great way to easily refresh yourself.
The Kicks Count app (and other products) are also brilliant at helping you feel in control when it comes to monitoring movements. Movements will inevitably become a key source of both reassurance and anxiety in equal measure! Having a way to visually see how the pattern is developing or continuing is a great help. There are many ways to help with tracking movements – whatever way your choose, its important to get to know your baby’s pattern. More on why #MovementsMatter and getting support is here – make sure you are familar with these messages.
Lastly, the Tommy’s Midwives Helpline is a great place to go if you have any questions – they understand bereavement and they are Midwives, so they are the perfect balance. I phoned them many a times in an emotional state and they were great to help me clear my mind and determine what I needed.
Saving screenshots or infographics from trusted sources on your phone (in an easy to find folder) is also really helpful for quick refreshers.
USE YOUR VOICE LOUDLY AND ADVOCATE FOR YOURSELF
As mentioned in the introductory blog post, I feel its incredibly important to be self-reflective and learn how you tick and what you need. Once you have determined that, use your voice (politely, of course!). Communication is key in pregnancy after loss.
The old phrase ‘quiet kids don’t get sweets’ is exactly what it is. If you lay it all out on the table, and share what you need – the person listening will be more equipped to help. They may not be able to give you everything, but its a start. I think this applies to anyone in your support term, but especially in your medical team. We often aren’t aware of available services or options, unless we ask or enquire about it.
In terms of advocating for yourself, I often found it challenging to talk in appointments as I would become very emotional. It helped to make sure I had the scan straight away, and spoke afterwards – bit more on scans below. I made sure that my wife was aware of my concerns, so that she could help explain if needed. You can also write things down, or if possible, email that person in advance. I kept a running note in my phone of questions or concerns in case I forgot at the appointment. You may have a midwife or someone in your team who is also able to help if you struggle to express it. Some people will seek the support of a doula. Trying to find ways to express your concerns can be challenging, but its equally important for your own benefit.
A great person to seek support from is a Consultant Midwife (by referral) or even the hospital’s Bereavement Midwife. Often these positions are able to help shape a more personalised service based on complex needs. We utilised both in our pregnancy.
PERSONALISING YOUR MEDICAL CARE
Depending on your history, your medical care in a subsequent pregnancy may include extra checks, tests or even specialists. Request a conversation early on (or even before) you are pregnant with your consultant can help you feel confident that those aspects are being addressed. Often you might not see the consultant until after the first trimester, so it can feel a long wait to know what care package you are going to receive.
Sadly, not every health care professional is aware of the specialist clinics around the country. If you feel that this is something that you want to investigate, do some research as early as you can – as referral processes may vary. We referred ourselves to the Tommy’s Rainbow Clinic in Manchester who were able to care for us in conjunction with our local hospital. You can find more information on Tommy’s Clinics here.
Don’t feel that you have to follow the set timeline of conversation topics in midwife appointments. In pregnancy after loss, our anxieties don’t follow a plan, and often don’t make sense. Talk about it at the point that its causing you concern or playing on your mind. If who you talk to can’t help, talk to someone else.
I started talking about my birth plan at 16 weeks as I needed the time to process it and consider my options. Eventually we spoke to our Consultant Midwife who helped us devise a plan and address my concerns. This resulted in a written letter from her in my notes that detailed certain aspects of my birth plan (minimal risk, for my wife to stay throughout and postnatally, a private side room, continuous monitoring). That way, I didn’t have to worry about those things being communicated by myself, mid-contraction.
Even if you don’t have a consultant midwife doing this for you – spending time over your birth plan (whatever it is) and having it written is so helpful. Speak to your midwife about your concerns, with honesty. People often give a short introduction to their history in their birth plan, so you don’t have to re-explain things mid-labour. Again – communicate and start early.
DEALING WITH PAST TRIGGERS
I think one of the first things that enters a lot of people’s minds when navigating a pregnancy after loss is can I go back to that hospital? Determining whether you can return to that hospital is a key – and again, will be reflective of your previous experiences. Its okay to not be able to, and its equally okay to be okay with going back there.
Consider what it is about the hospital that is your concern and see if there are ways to address those individually with your support team. For me, I struggled with the thought of going back to the MAU where we found out Leo had died. So I contacted my Bereavement Midwife, and asked for support. Together, we had a tour and met the manager. Doing this at 20 weeks before I needed to call about concerns was one of the best things that I did. I was able to ask any questions about how we might be looked after, they advised on what to say when I phoned, and they took us into the triage rooms. It enabled us to have a different visual of walking through those doors, and also a helpful ‘name drop’ if ever I needed it. I’d recommend doing that to anyone.
We did similar with our Consultant for the Delivery Suite and Postnatal Wards. It really helped to demystify those areas, and create a new visual to help us prepare for labour and beyond. I also requested that my consultant did our 20 week scan as the usual department waiting room was a huge trigger for me, as she would be able to see us elsewhere in her clinic.
Waiting rooms are challenging – our consultant was an absolute gem, and in the early days would get a midwife to put us in a side room whilst we waited. It was so very helpful. Hospitals are often running late, so try not to arrive too early (or busy yourself in a cafe if you need too). Take something to eat and drink, absolutely put headphones in to drown out annoying chatter (perhaps some mindfulness if it helps, or guided breathing), or take a book or something to occupy yourself. And you can always ask the question, is there anywhere else I can wait?
Scan anxiety is a huge deal – and makes the waiting rooms even more challenging. I talk about general anxiety in this blog post, but there are small things at the scan that can help. Make sure you have a SANDS sticker (these are designed for health professionals to order, but I just ordered my own anyway, because I’m like that… you can also get some from Kicks Count) for your notes – yes, some people don’t spot it, but its helpful to have or highlight without saying all the words. Ask to have a heartbeat confirmed straight away – some people might not realise just how anxious you are, and that wait can feel very long. Often there are screens for you to see as well – if you’d rather wait to have a heartbeat confirmed before you saw the screen yourself, ask for it to be switched off or turned away from you in the meantime.
Try as much as possible to always have someone with you at appointments. I know not all workplaces will allow partners off for the volume of appointments you might have – but it really is worth asking or finding a compromise. Its important for them and their anxiety too, so its a worthwhile case to make. If not, a relative or friend is really helpful. Just to help keep you calm, distract you and be a support. And most importantly, bring you cake.
I fully appreciate that it can be really challenging to say the words “I’m feeling really anxious about this because of my previous history of stillbirth” but saying it out loud to someone is helpful for them to recognise and adapt their care.
If you are really struggling with revisiting memories, please seek support from your GP.
MONITORING MOVEMENTS AND SEEKING REASSURANCE
I used the Kicks Count App to help me monitor movements, so finding a way that works for you is key. Get to know the advice inside out, and make sure that your partner and those closest to you know it as well. It is often really hard to determine if you feelings are genuinely reduced movements, instinct, or anxiety. I soon came to the realisation that it simply did not matter – whatever is causing you to feel uncertain, needs addressing, and you are always worthy of that reassurance and support, so #AlwaysAsk.
I fully accepted that I would be attending the Maternity Assessment Unit or my midwife regularly for reassurance. Appointments are rarely timed alongside anxiety crashes!
Here is what I learnt:
- Seek reassurance at the start of your anxiety crash – don’t delay. It’s unlikely to disappear, so heading to the hospital at 6pm is always better than 11pm. I got to the point of going in periods of relative calm, because I knew I was about to spiral, so nipping it in the bud is the moto!
- Be empowered and assertive. Our hospital had a triage receptionist who was mostly just filling in a form. Those conversations were at times, beyond frustrating. And unfortunately, even triage midwives would tell me to lie down and drink orange juice – even with my history! Know what to expect from reporting reduced movements, assert yourself and your history. Eventually, the phone call for me went “I have a history for full term stillbirth and am currently X weeks pregnant and I’m concerned about reduced movements, I’ve had a lie down already (I hadn’t), so I’m just letting you know that I am on my way in for some monitoring” and I’d often name drop the manager I met on my tour.
- Stay as long as you need. CTG monitoring or a listen in in these scenarios are often mostly for your reassurance. Obviously, if there is a genuine concern – then that will be addressed. If all is determined to be well on the monitoring, but you still feel unsure about going home – communicate this and stay until you feel safe. I was always offered that opportunity, and always told to come back even if it was in an hour if I needed too. You are never waisting anyones time.
IN CONCLUSION… Don’t be afraid of speaking up and asking the question, share your concerns, advocate for yourself, find ways to manage your triggers, get to know how to monitor movements and never feel like you can’t seek reassurance.
I really hope that this series of blog posts is helpful – if you are considering a pregnancy after loss, or are pregnant after loss, you are never alone. Whatever you feel, others have felt it before.
Carry on reading here :