A bittersweet motherhood

Jess from the Legacy of Leo discusses her families journey through stillbirth, miscarriage and pregnancy after loss featuring our Maternal & Fetal Health Research Centre.

Today, we had the honour of attending a training event for Central Manchester NHS Trust, as a patient representative for the Rainbow Clinic. 

We’ve discussed previously our involvement with the Clinic – it uniquely provides care in a subsequent pregnancy following a stillbirth or neonatal death. Their method of antenatal care is all inclusive, providing emotional and medical support, in a combined approach with both midwife and consultant. 

If local, a family would be referred to this clinic at the start of their pregnancy, and be able to have all of their antenatal care managed under one understanding and comprehensive roof. I can imagine that this is an incredible benefit to any family journeying through a rainbow pregnancy – and one of the words that struck me in their patient feedback word cloud that was shown today, was lucky.

Their support isn’t just local however, and patients will regularly attend from others places in the UK, by referral. This is what we have done, and combined their care with that from our local hospital.  The clinic also combines with research. Research which is crucial in delivering more and more positive outcomes in pregnancy. Their research has reduced stillbirth by 19% at St Mary’s Hospital where it is based. Which is just incredible.

We learnt today, about the other clinics and research avenues that they are involved in – including the placenta, lupus, pre term labour, vascular disorders, and diabetes. This research is crucial, and through their excellent levels of recruitment into the various studies that their clinics are linked to, they are able to obtain participant numbers that lead to substantial and credible results in pregnancy research. Often, the studies are collaborative with national and international studies, pulling in a wide reach of experiences and participants. Whilst delivering research, they deliver exceptional antenatal care and are really able to position themselves at the forefront of these developments. 

Part of the their funding comes from Tommy’s, the pregnancy charity that we have been fundraising for more recently. It really does show how research is needed to change the outcomes for many people, together with the delivery of individualised care. If anything, attending today just makes us more determined to fundraise and support the charity and the research centre.

 The event was part of the Equality, Diversity and Human Rights Week at the Trust  and specifically looked at Inclusion and Exclusion in Research. I was asked by Louise, the Rainbow Clinics Specialist Midwife and all round lovely, lovely person, if we would come and share our story. Having had, what I would consider, fair treatment through our medical journey, I was unsure what I could specifically contribute to the main theme of the day. However, after speaking to several people, I understood that for those working in the field, just hearing a patient story is powerful, emotive and creates worthwhile food for thought. 

Having never done any real public speaking, I was a bit unsure how I would react. And whilst I’m quite comfortable writing about our experiences, or saying it out loud to people I know, the thought of saying it to a room of 60 odd people… Is a little daunting! There is something about seeing someone else’s reaction and emotion to your experiences that makes you realise that actually, you’ve been through a really shit traumatic time. 

I managed to share our story without my emotions getting the better of me – helped by refusing to look at The Wife or the midwives that have looked after us! The comments on the feedback forms and everyone’s reaction was really heartwarming, and I feel proud that Leo and our journey can be put to good use. If it just makes one person adapt their communication or approach to someone going through trauma or baby loss, personally or professionally, then it’s worthwhile. 

Louise, Susanne and Catherine – the Research Centre Midwives – are all so unbelievably nice. They place such care, love and compassion into their work, and always make you feel so welcome. Louise kindly offered us a scan (and got us lunch!) before the event, and I’m always keen to hear about the types of research and activities that the whole team are involved in. Being able to spread the word, or help them, in some small way meet their aims and extend the Clinics ethos wider into other Trusts in the NHS is incredible. 

Whilst I won’t share everything I said today (because it’s really quite a long one!), I’ll share a few sections from it, to give you a taste of what I said. We are so passionate about the work of the Research Centre and that of Tommy’s, that we will always support them in some way. 

Discovering Tommy’s…

I don’t recall ever engaging with the true concept of stillbirth prior to our own experiences of it. I knew very little about baby loss, only once or twice knowing of a friend who had had a miscarriage. Leo was born during what I could only describe as ‘Stillbirth Week’ in the news. The Lancet papers on the worldwide situation had just been released, and as a result the news was covering the topic quite widely. Because of this, we discovered Tommy’s and the work of Dr Alexander Heazell. With this, and delving online into the world of baby loss, I started to learn. I needed to understand this – to understand stillbirth – I needed to understand how this could happen so much, yet I knew nothing about it.

Getting a second opinion on Leo’s post-mortem…

Whilst chasing the hospital for our follow up appointment, and becoming increasingly frustrated, I contacted Dr Heazell to discover if and how we could seek a second opinion on Leo’s post mortem. I needed to know that we could, 1) trust our local hospital and 2) that we had allowed Leo to answer all the questions that we had for him. What we had discovered about the Tommy’s Research Centre at St Marys allowed us to feel confident that if they didn’t know why he died, then no one would know. There is a sense of peace in that. Regardless of the answer. 

The difference in approach to baby loss…

Our hospital told us that ‘there is no way to measure the placenta’, ‘that many babies survive with a small placenta’, and that sometimes ‘babies die’. This complacency to the issue of stillbirth was not helpful for me. I was grateful and reassured that Dr Heazell was able to tell us differently. In a subsequent pregnancy, the Research Centre would be able to measure and assess the placenta in the clinics, any growth change would be investigated, and that placental insufficiency is a prominent area for their research. The whole team at Tommy’s and the Research Centre give us hope by fighting baby loss, and that’s what bereaved parents need. 

Care during a subsequent pregnancy…

The Rainbow Clinic – and the support from Tommy’s overall – has been a lifeline. Knowing that there are people fighting stillbirth, determined to prevent it, is such a reassurance. It’s a fight really worth fighting, that needs more focus and attention, funding and support – and its charities like Tommy’s and the people that they support at their various clinics, that prove change can happen on a daily basis. 

Throughout our involvement with the Research Centre and the whole team, they have been nothing but compassionate, honest, inclusive and immensely supportive. They aren’t just a medical team, they are people actively working to improve and save lives before they are even born, every single minute of the day. They are so accommodating to us both as a couple, as mothers, as bereaved mothers. They truly, deeply, understand our fears and anxieties without us having to explain them – and they honestly and directly give us the information and advice that we need. They do not sugar coat the situation for us – this is not something that bereaved parents need. They need all the information, on the table, to feel in control and to feel informed and empowered. 

We have worked hard to craft an exceptional antenatal team during this pregnancy. We knew going into it that it was going to be incredibly challenging. Many Health Care Professionals locally hadn’t heard of the Rainbow Clinic and it’s been an honour to spread the word of their achievements further afield. As a result, we know others that have sought their support, and health care professionals that have connected with them and looking at ways to improve care more locally to us in similar ways.

Pregnancy after Loss is full of quiet excitement and joy that is often strangled by crippling anxiety and fear. The burden of responsibility that is placed on me, as a pregnant mother is beyond description – and the pressure to succeed, and not fail again is huge. The Rainbow Clinic, their knowledge, and their support go along way to helping lift an element of that burden, and I couldn’t be more thankful.

So I spoke, survived, and didn’t cry. Declaring myself now available for christenings, weddings and letter box openings nationwide!

We are fundraising for Tommys, in Leo’s name. You can read more or donate here. 

– J x

You can read Jess's original post on her blog The Legacy of Leo