Tommy's guest blog, 18/20/2016, by Louise Stephens
Stillbirth is a devastating experience. Tommy's Stillbirth Research Centre in St Mary's Hospital Manchester researches the causes of stillbirth and treatments to prevent this heartbreak.
One of the main causes of stillbirth is fetal growth restriction (FGR). We opened the Manchester Placenta Clinic to combine specialised care for pregnancies affected by FGR 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
People often say things to me like; "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 midwife in the Placenta and Rainbow Clinics 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?
This is an area of midwifery people don't talk about
The truth is that 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 is why I came in to the midwifery profession in the first place.
But the care we give is thanks to Tommy's who fundraise for our specialist clinics, ensuring we have expert clinicians and technology, and have the money to fund trials into new treatments.
I have learnt not to judge
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.
Fetal growth restriction is a painful diagnosis
I do not feel we are ever able to prepare somebody for the death of their baby. 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.
The initial reaction to their news is always around WHY it is happening. WHAT can they do to make it better. Can they rest more? Eat more? Will that make their 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 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. 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.
They may face decisions they never thought they would need to face
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.
That's why the research is so important
I am passionate about making a difference to families, being involved in ground breaking research which hopefully will improve pregnancy outcomes. We're involved in numerous trials working out what is stopping the baby from growing and testing drugs that could treat this.
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 antenatal 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.
I hope assist in the set-up of a Rainbow clinic at another trust, giving more 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.
At 24 weeks pregnant, Beth found out that her baby had fetal growth restriction. She was referred to the Placenta Clinic at the Tommy’s Manchester Research Centre at St Mary’s Hospital. After close monitoring and specialist care, baby Isla was born at 31 weeks weighing 2lb 5oz.
Sharon and her husband Andrew from Manchester lost their son, James, at 29 weeks to stillbirth. Sharon was referred to the Tommy’s Rainbow Clinic with her second pregnancy
Anne and Eddie had 3 losses, including one late term termination for medical reasons, before they were referred to the Rainbow Clinic at St Mary’s in Manchester. Their son, Albert, is now 8 months old.
Shema and her husband Ian lost their firstborn son, Altair, at 21 weeks. After discovering she had a rare condition, she was supported to full term in her next pregnancy by Professor Alex Heazell and the Tommy’s team at St Mary’s in Manchester.
After Archie was stillborn, little Ella was born thanks to the care of the Tommy’s Rainbow Clinic in Manchester.
Rebecca suffered a neonatal death and 5 miscarriages and before being cared by the Tommy's Rainbow Clinic in her 2 next pregnancies
Clare and Rob suffered the heartbreak of having 5 stillborn babies. Then they had Lyla thanks to the care of the Tommy's Manchester centre Rainbow Clinic.
The Powsney's were in the care of Professor Alex Heazell at the Tommy's Rainbow Clinic after their baby Joshua was stillborn in 2014.
Dena and Will's son Leo was born under the care of the Tommy’s Placenta Clinic at St Mary’s Hospital, Manchester.
After Sarah Dobson had a stillborn son, Hamish, she was cared for in her following pregnancy in the Tommy's Rainbow clinic.
Simon and Dawn were devastated to discover their first child Tegan had died of unknown causes when she was 36 weeks pregnant.
Professor Alex Heazell is the Clinical Director of the Tommy's stillbirth research centre in St Mary's Hospital, Manchester.