Miscarriage Care or Care-less?

I don't often write about the infertility experiences I had before we adopted Katie and Pip.  It's mostly because my life has moved on but partly because it's not a time I want to dwell on too much nowadays because I want to focus on the positives.  So why am I writing about it now you might ask?

Well I wanted to lend my support to a campaign that Mumsnet are running to improve the care that women receive when experiencing a miscarriage. Having had 10 miscarriages you could say I'm sadly a bit of an veteran.  My experiences haven't been overly positive I must say.  I would like to see set standards implemented for how the medical community should treat their miscarriage patients.

I say patients in the plural for obvious reasons but also because there are generally men involved alongside the woman who is miscarrying.  The men will probably be surprised I'm mentioning them because, for the most part, they are ignored during the whole miscarriage process. But they are very much a part of the experience and are dealing with their own feelings whilst supporting their partner through what can be a traumatic experience.

I will never forget my first miscarriage.  It was awful.  I had never been pregnant before but something felt wrong, right from the start.  I continued to have positive pregnancy tests and the GP felt that my uterus was growing as expected.  No-one listened to me and my symptoms dismissed.  A scan was never offered.  At nearly 13 weeks pregnant I had my first routine scan only to discover that I had a blighted ovum.  This is where an amniotic sack continues to grow but there is no pregnancy inside.  I was confused and devastated.  I just wanted it all removed as quickly as possible.  I was put on an antenatal ward overnight and spent the night listening to the shouts and screams of women giving birth. The only follow-up I was given was a leaflet from the Miscarriage Association.  I later discovered that the remains of my pregnancy had been kept by the hospital for tests.  This was done without my permission.

I had three more miscarriages before being referred on to a specialist miscarriage unit in London. Each of these miscarriages were first trimester and after a heartbeat was detected.  During that period I can recall having scans in the main UltraSound clinic despite being a miscarriage risk. I had to sit with heavily pregnant women with a bladder full to bursting with water.  With each pregnancy I would have a heartbeat for the first scan but an emergency scan the following week, due to bleeding, would show that the heartbeat had stopped.  Each time I had to walk back into the busy waiting room to use the toilet the empty my bladder so that I could have an internal scan which would confirm that my baby had died.  We would then be whisked away to a relatives room with a chintzy, flowery sofa and pretend windows on the walls to await the poor lady who would come to talk to us.  Our fourth miscarriage was a twin pregnancy and the devastation cannot be described.  It was gut wrenching and we thought we would never recover.  With these four miscarriages I was a patient on the day surgery unit.  A soulless place where I was ignored by the nurses yet I often heard them being supportive to a patient in the next cubicle.  It was like they didn't know what to say to me but it felt like they couldn't be bothered.  The Doctors/Anaesthetists would come and ask questions to prepare me for surgery.  Most of the questions were sensible pre-op questions but there were also questions like:

"How far along is your pregnancy?"

"Are you having a termination?"

Cruel and insensitive questions.  They should just read the file and know those sorts of answers before coming to speak to me.  They should know I had just been told my baby had died, I shouldn't have to tell them over and over again.  I bit back the response I wanted to give.  It was very impolite.  Instead I answered their questions with no emotion.  When the Doctors were accompanied by a student they would discuss my secondary infertility as if I wasn't there.

With each pregnancy I had to book in with the Practice Nurse.  I had to go through all the booking in questions whilst wondering what the point was.  I had to let the nurse know each time we miscarried. No-one else told her.  I received vouchers through the post at the time of the due date.  It was a kick in the teeth every time.

Being referred to a specialist unit in London was a breath of fresh air.  Here were people who understood the stress we were under and the devastation we had experienced.  They gave us hope. They offered us weekly scans. We could phone at any time.  It was a massive trek though: to and from London, which was over and hour on the train plus and underground journey.  Doing that when bleeding, yet again with the next pregnancy, was horrific.  We went through three pregnancies with this unit.  I had surgery to remove a uterine septum in the worst hospital ward I have ever encountered. I took asprin and injected heparin daily due to a blood clotting disorder.

Each pregnancy ended in miscarriage. Each surgery to remove the pregnancy (ERPC) came with a visit to the local day surgery unit though where I was ignored over and over again.  I knew the drill by then. I would arrive at the crack of dawn as instructed; endure the questions; have the surgery; eat some toast and drink a cup of tea; go to the toilet to prove my bladder wasn't damaged and then I would get dressed and wait to go home.  I never had a visit from a sympathetic nurse to ask me if I was OK.  I took a book and shut myself away emotionally.  Waiting until I could get home and howl my pain in safety.  There were never any follow-up visits.  No-one ever checked if I was medically well.  I had to ask for pain relief, having learned that paracetamol was insufficient to take away the pain.  It was never offered by the medical staff.  Everything I needed was led by me.  I had to sort everything out myself.

We decided to try some different treatment and referred ourselves to another clinic in a neighbouring county.  My sister had a positive experience here.  They weren't specialists but they had some good ideas.  Here we probably received the best patient care out of all of the hospitals we experienced during the time we were trying to conceive.  I was well cared for in their day surgery unit.  The doctors were really lovely.  They didn't know why I kept miscarrying but they supported us as best they could. Their kindness was very well appreciated at a time of extreme lows.  With this clinic we also tried two rounds of IVF and, whilst both treatments ended in pregnancy, both babies died after a heartbeat was detected.  At the time I came to the conclusion that my body was just ahead of medical science and we decided enough was enough.

I have only recently discovered that the remains of all my babies were all incinerated alongside the hospital waste.  I was never given an option for what I wanted or have a choice as to how they were cremated.  I wish I had known that I could challenge this.  I would have. Now I am left feeling that my babies didn't receive the treatment that they deserved.  This will haunt me until I die and I hope that no other woman has to suffer this.

This is a snapshot of 15 years of pregnancies and miscarriages.

I have seen an improvement in services.  The local hospital does now have an early pregnancy unit. This arrived during our period of infertility.  The scans for early pregnancy and threatened miscarriage are now delivered separately from the main antenatal unit although you do still have to share the same main waiting area when you first arrive so you can't avoid seeing heavily pregnant women. They may have improved this even further but I've not set foot in there for many years now.

I was never offered counselling.  I thank the heavens for my friends.  They all knew the moment I was pregnant and they held my hand throughout the whole process.  They learned to dread scan day as much as we did.  They were brilliant.  I can't thank them enough for their support during that time. I was always very open about my experiences and I feel that I benefited emotionally from this.  I did seek counselling for myself through this process to try and understand what I was experiencing and to fathom out a why.  The "why" came, for me, as a spiritual answer the day I met my adoptive daughter, Katie.  I knew I was born to be her Mummy.  A lot of the emotional load fell off me on that day.  It does hit me from time to time though. Moments when the emotional pain tears through me.  Having since adopted Pip has helped me open some of the baby doors I had closed when I thought I would never have a baby but it has been difficult to allow those doors to reopen and I'm due to start a period of counselling to talk some of those emotions through.

I am writing this very difficult blog post today to lend my support to the Mumsnet campaign in the hope that changes can be made to prevent women and their partners from suffering anymore than they need to during a miscarriage.

So what needs to change?

1. Well the language used for one thing.  I could have literally punched each and every person who told me I was having an abortion.  No I was not having an abortion! Yes I know it's the medical term but do you know the emotional impact hearing the word "abortion" has when you're having a miscarriage? It's insensitive and please just use the word miscarriage.

2. Don't ask a woman who is laying in a hospital bed how many weeks pregnant she is when it's clear from her records she has had a miscarriage.  Read the file before you speak to her please!

3. Give all women an early scan in a place that is not even remotely close to the room where you are scanning heavily pregnant women.  The last thing you want to see when you have  just learned your baby is dead is someone rubbing their hands over their blossoming baby belly.

4. If a woman is miscarrying at home then please scan her quickly so she can understand what is happening to her and offer her the appropriate care - both physical and emotional.  Please can there be a dedicated telephone number that she can phone for help and advice whilst she is miscarrying? It's so scary when you miscarry at home because you have no idea what is going on and whether it is a complete miscarriage or not.

5. Tell the women and her partner if she has one with her what is happening.  Be supportive but clear. They will be in shock.  They will be feeling very emotional or very numb.  They might not hear everything you are saying.  Keep it kind but clear.  Offer a follow-up appointments for all the questions that will follow later on.

6. The hospital need to speak to the GP surgery and the Practice Nurses to tell them what has happened.  Do not leave it to an already distraught person to have to tell everyone.  The GP Practice should then follow up their patient with a call or an appointment to make sure they are OK.

7. Please acknowledge the partner at all times.  Don't just speak to the woman.  My husband was treated as though the miscarriage hadn't happened to him.  He was invisible.  He had no purpose.  The doctors only ever spoke to me.  This made it even harder for him when he was trying to be supportive but was also devastated himself.

Mumsnet have developed their own Miscarriage Code of Care which I want to support.  The details of this can be found here:

Mumsnet Miscarriage Code of Care

There is also a news report in The Guardian today highlighting some of the outcomes of a recent Mumsnet survey into the experiences women had had of miscarriage. Click here to read the article.

As a final point I just want to add that women experiencing miscarriage need a lot of care.  Emotional care and physical care.  The medical profession often seems careless with their terminology and their care generally feels lacking.  This needs to change and it takes so very few things to make it better.  I call on all the political parties to do something radical and actually talk to each other about this.  Don't try and score political points at the expense of a tragic experience.  Help us to get the best care available.

Thank you!



Edited: 22 June 2014 to add:

Mumsnet have produced a short film to accompany their campaign.  Check it out on You Tube. It is poignant and the statistics brought tears to my eyes......