Tommy's guest blog, 18/20/2016, by Louise Stephens
Stillbirth is a devastating experience that affects 1 in 10 parents daily.
Tommy's Maternal and Fetal Health Research Centre in St Mary's Hospital Manchester researches the causes of stillbirth and various ways to prevent this heartbreak.
The centre also runs specialist clinics that allow us to combine research with the best treatment and care. Our Rainbow Clinic was opened to care for pregnant women who have previously suffered a stillbirth.
One of the main causes of stillbirth is fetal growth restriction. We opened the Manchester Placenta Clinic to combine specialised care for pregnancies affected by this complication with research into why it occurs and how it might be treated.
Louise Stephens is a specialist midwife in Tommy's placenta and Rainbow clinic in Manchester.
Here is her story
I am frequently asked what my job actually involves.
Most people, including my own family, have little understanding of my role as a specialist midwife.
I frequently hear;
"Surely being a midwife is the best job in the world, all those new babies you're bringing in to the world, all those cuddles."
Being a placenta and Rainbow clinic midwife can be the complete opposite end of the spectrum.
How do you prepare parents who have a baby with severe fetal growth restriction that their baby is not going to survive? This is not something that was included in my midwifery training some 18 years ago.
How do you care for families in a subsequent pregnancy following a stillbirth (or sometimes sadly more than one stillbirth)? Again, not something I was specifically trained to do.
What do you say? How do you react at the time of death?
Sadly, Midwifery is not just about new life. This is an area of midwifery people choose not to talk about.
It's taboo, but as midwives and health professionals we need to break this taboo and speak more openly with the families in our care and with each other.
I feel very lucky being able to provide the care that I give, being able to make a difference to families, which is why I came in to the midwifery profession in the first place.
This is thanks to Tommy's who support our specialist clinics, ensure we have expert clinicians and technology, and help fund our vital research.
Having worked within this specific field for three years and in this specialist role for a year I have learnt from the families. I have learnt from the feedback they provide us. I have learnt that each family is individual due to their ethnicity, beliefs, religion, education, occupation and previous life experiences. I have learnt not to judge but to support the families own decisions, to respect them and understand that each individual reacts and copes differently to such life events.
Families build a trusting relationship with me and want to know the truth. They want me to be honest about their situation.
Sometimes we cannot give answers as we do not always have them.
I do not feel we are ever able to prepare somebody for the death of their baby; after all they are often more than 20 weeks when they first attend the placenta clinic. They have felt their baby move and have started to build a bond with them.
Being diagnosed with a growth restricted baby with a non-viable weight is heartbreaking for the parents and often completely out of the blue, tearing their world apart.
Initial reactions to their news - why? Is there anything I can do to make this better? If I rest or eat more will that make my baby grow?
This is often followed by guilt, feeling a failure to carry a successful pregnancy and can even lead to isolation.
Women report not wanting to collect other children from school, for fear of what conversations or remarks they may face in the school playground.
Women feel out of control, many are still working and have a life plan. They had planned to start their family, in line with their career plan. Sadly this diagnosis was not part of their plan, leading to shock and sheer upheaval.
With very frequent visits to the clinic (sometimes daily) I build a rapport with families. If I don’t visit daily then there may be a daily call or email.
As pregnancy progresses there are other interventions such as visits to the Neonatal Unit, meeting neonatologists, making decisions - decisions families never dreamt they would have to face.
Should they wait for nature to take its course which may result in death as the placenta fails? Should they end the pregnancy that is not going to achieve a viable weight? Should they intervene and deliver a baby at a borderline viable weight that sadly may not survive the neonatal period or may survive but may have life-long health problems.
At each stage it is my job to work as a team with other experts, to provide families with all the information to make these very difficult decisions, to support them in their decision making, not to judge.
I am passionate about making a difference to families, being involved in ground breaking research which hopefully will improve pregnancy outcomes.
For the past 18 months we (Central Manchester University Hospitals NHS Foundation Trust) have been involved in the global Strider study.
This was a clinical drugs trial, offered to ladies with severe fetal growth restriction from 22 weeks.
It was a randomised, double blinded trial so therefore neither us or the women involved knew if they were taking the active drug Sildenafil (also known as viagra) or a placebo.
We have now finished recruiting and were proud to be top recruiters globally with 41 ladies randomised from across the region. I am excited for the results next June '17.
To have a drug to offer these families at a time of sheer desperation when currently there is no cure would be amazing. Watch this space, I have everything crossed!
I feel research is vital, to make changes, to improve care and improve outcomes for future pregnancies and generations.
As a research midwife, being involved in research that can impact large numbers of women and babies across the world really is making a difference.
I am passionate about teaching other health professionals. I teach on the Babylifeline Predict to Prevent course, cascading what I have learnt; from the latest evidence, research findings, the experts I work with, the families I care for and National Guidance.
I do all of this with the hope that this will improve practice nationally.
Getting to know the families and being part of their journey is the most rewarding part of my job. I feel offering continuity of care and carer is essential in complex high risk pregnancies.
I feel very privileged to be a part of a family’s journey; to share their experience, to laugh and to cry with them, to ride the roller coaster of good days and bad days.
It was an honour to be shortlisted and runner up for Royal College of Midwives Team of The Year award 2015 and winners of British Journal of Midwifery Team of the year 2015.
It was a terrifying, but at the same time an amazing experience, as a Midwife to present at Fetal Growth International Conference in Barcelona '15. I was proud to present the latest findings of the M.R study on behalf of Dr Emma Ingram (funded by Tommys).
As a midwife I never thought I would be given so many opportunities, it really has been a dream come true.
I hope to complete my Masters and assist in the set-up of a Rainbow clinic at another trust, giving families the opportunity to access specialist services on a wider geographical scale.
I would like to thank all my amazing colleagues I've met along the way, each and every one of you have made me the Midwife I am today.
I would like to thank all the families I've cared for, you will all hold a special place in my heart including the beautiful babies no longer with us.
Finally I would like to thank my fabulous family and friends who are always there to support me and wipe my tears away after a particularly bad day.
Losing a baby at any stage of pregnancy can be a devastating experience. Today we recognise the parents who have endured this heartbreak and honour the little ones they have lost, because every parenting journey is unique and we are all mums.
Losing a baby at any stage of pregnancy can be a devastating experience. Baby Loss Awareness Week occurs every year to recognise the parents who have endured this heartbreak and honour the little ones they have lost.
'You never know what pages you might find, or people you might meet that could make this journey a little easier.'
'I wanted to share those stories and feelings to encourage other fathers to talk about their experiences and not feel alone.'