Yesterday I went to the city to attend an NHS Maternity Review listening event, facilitated by Bliss, for parents who experienced complications in pregnancy, labour or birth affecting the health of mother or baby, including admission to neonatal care. Yesterday, someone listened to me.
I have always said that I can write it better than I can say it, but I knew that if I did not attend yesterday I would regret it. I knew that if there were going to be many more women like me, treading a path like mine, on a journey like mine, I needed to make sure I did what I could to make that journey a little easier. I knew that I was in good company. With Emma and Helen by my side, I spoke out about my experiences.
About the way that my second birth was managed. The cancelled surgery, with no explanations. The lack of midwives on the labour ward that led to being left alone for hours, in pain and fear. The lack of suitable equipment in my delivery room, including blinds on the windows so that workmen outside were able to see in. The lack of compassion. The doctor who refused to believe I was in labour. Decisions made over my head. My husband left in an empty delivery room as I was taken to theatre. Consent forms signed after the event. My husband being sent home, ripped away from the wife and baby that only hours previously he had believed to be dead. Being discharged from hospital with no pain relief, bruised from neck to knees. Being on my knees desperate, frightened, and alone with no health professionals able or willing to help me.
And this was hard. This was really hard. I have never ever spoken about this experience to a room full of people. I have never ever told anyone about any of these things. I have written them, hidden behind the words and hit publish. But I have never been able to speak them out loud. And though I found it hard, I did it.
And I was listened to. By a member of the NHS maternity review panel. By Baroness Julia Cumbeledge, who is leading the review. Who told us in no uncertain terms that the report she will file on 31st December 2015 is only the beginning. She intends to make the changes that are needed. By members of Bliss, who listened with compassion, understanding and kindness.
I also spoke about my pregnancy and birth with Elsie. I spoke about the ‘secrecy’ of IUGR. How those letters were written on my notes but never uttered during appointments. Never spoken by a professional, until the night before she was born. Until I was hooked up to the CTG and they thought they were losing her. Until it was almost too late. I spoke about the lack of information I was given. How I googled for information and support in my hour of need.
I spoke about attitudes towards my VBAC intentions and how this decision was ripped away from me. I spoke about the terror and fear I felt each time I left that doctor’s consulting room with a new scan date. The weekly scans and the long, lonely drive to the hospital. The panic and the knowledge that stilbirth was a very real risk. I spoke about the disjointed care I received, being pushed between three different hospitals depending on which appointment I was attending.
I spoke about the lack of information I was given with regards to what would happen after my IUGR baby was born. I spoke about my husband once more being turned away after rushing to the hospital, under doctors orders, believing another emergency section was on the cards. I spoke about the enhanced recovery and we agreed that one size fits all will never work in the NHS maternity services.
I also spoke about the lack of support and information available to IUGR parents, particularly those with babies born at term with no immediate health concerns. Babies like Elsie, who didn’t really fit into any box. Babies like Elsie who were discharged too early and with no information with regards to how best her care could be managed. Babies like Elsie, who were not like other babies born at 37 weeks.
Bliss were amazing, and wanted me to know that they are here for families like mine. They support families of babies born too soon, too SMALL and too sick.
The whole afternoon turned out to be empowering and very positive. Despite raking up all the stuff inside my head that makes me feel anxious, paranoid, fearful and weak. Despite voicing all of my deepest fears and emotions to a room full of strangers. Despite believing I could not go on, my voice would not hold out… despite all of that I am so so glad I went. I am glad I spoke out. I am glad I did my small bit to shape the future of the maternity services for my own children.
On conclusion I was asked what one thing I would have changed about my maternity experiences and I found it hard to think at first. I decided that simply I would have liked more support. I appreciate things go wrong and in the very essence of birth nothing is predictable. But more support, information, kindness and compassion may well have made things so different.
If you have experienced complications in pregnancy, labour or birth affecting the health of mother or baby, including admission to neonatal care, please complete this anonymous survey for the National Maternity Review. Open until 30 November 2015.