Being told at our first antenatal scan that our baby had died a month or so earlier was utterly heart-breaking, as I have previously written about for Parentdish.
One of the things I found especially difficult was being told mid-way through my 'medical management of miscarriage' that our much-wanted baby would be 'incinerated with the rest of the day's waste'.
For a long time, I thought I was the only person who struggled with the idea of babies being disposed of alongside syringes, bandages and other medical waste. It was, after all, common practice and I wasn't offered an alternative. I wondered if I was being overly sensitive.
It was only five years later when the team behind the recent Channel 4 Dispatches – Amanda Holden: Exposing Hospital Heartache asked me to speak about my experiences that I began to realise other people found it shocking too.
The programme has led to NHS trusts in England and Wales being told by the Department of Health that the practice must stop and the Human Tissue Authority being told to make sure its guidance on disposal of baby remains is clear. The practice had already been banned in Scotland.
It's more than I had ever have dreamed of happening. However, it isn't the only insensitive medical practice faced by women miscarrying that needs to change. After the show, I was inundated with women telling me about the unnecessary practices that had added to the grief of their miscarriage.
My friend Elizabeth was told at a scan that it looked like she was miscarrying twins. She says the sonographer went to the room next door to ask the consultant for a second opinion. "Because the consultant was catching up on her paperwork she was too busy to attend to me," says Elizabeth.
"She flatly refused to come and look at the screen and I was told to come back a week later. I felt as though the sonographer wanted to be sure, which was perfectly right, but that second opinion could have prevented that delay and what was almost a double whammy."
Elizabeth had to wait three weeks before her miscarriage was dealt with, something she found very difficult.
"I honestly think whilst the NHS deal with this scenario daily, and might be a bit immune, we aren't and I think they forget that the couple are heartbroken and aren't 'just another couple'."
I had to wait a week for my medical procedure too. I found it deeply traumatic knowing there was a dead baby inside me and was petrified of leaving the house for fear of something happening.
My friend Wendy says the same. She, too, found out at her 12 week scan that her baby had died four weeks previously and had to wait a week before she could have a D&C. "I had no indication anything was wrong. It was such a shock," she says of what would have been her second child.
The long wait was upsetting but worse was to come for Wendy. She was stunned to find herself on a ward with six heavily pregnant women having elective C-sections, as well as a man having a knee operation.
"There were no curtains drawn and the women were there with their bottles of milk and baby grows. Not only was I told my husband wasn't allowed to be there but all their husbands were there with them," she says. "They were all talking about whether they knew if they were having boys or girls. One of them asked me 'what are you in for?' and I couldn't answer."
Other women I have spoken to have been on wards with women having abortions. Others have been devastated when medical staff have failed to read their notes and have presumed they are there because they are choosing to terminate their pregnancies.
One woman was approached by a nurse who wanted to discuss contraception with her so she didn't end up needing another termination, while another was asked "Are you sure you want to go through with this?" It was only afterwards she realised the doctor had presumed she was having a termination rather than a medical management of miscarriage.
Many women have told me they find the language used by medical staff upsetting. Phrases such as 'products of conception', 'fetal matter' and 'spontaneous abortion' may be accepted medical terminology – but it can be difficult to hear people talking about your much-wanted baby in such a clinical way.
None of the women I spoke to complained about their treatment, firstly because they were far too upset after losing a baby to put themselves through any more stress but also because many of them just accepted that was the way things happened.
Yet as my experience with Dispatches shows, just because something is the norm, it doesn't mean it's right and speaking up can get results.
Ruth Bender-Atik is director of The Miscarriage Association. The organisation believes that the kind of care that women or couples receive from their GP, hospital or community staff can make a real difference to how they cope with the experience of pregnancy loss. It provides training for medical staff on how to best support women and couples who have had a miscarriage.
Ruth explains there are small – and free – things staff can do to can help support patients. For example, women who have received bad news often find it distressing having to walk back into a waiting room full of parents-to-be clutching scan photos. Providing different exits is often logistically impossible but Ruth speaks of one hospital where staff ask people not to look at their scan photos in the waiting area so as not to cause such upset.
Likewise, if a lack of available beds means miscarrying women find themselves on mixed wards, staff can make sure patients are given privacy by closing the curtains around beds. "These are simple things," says Ruth, "but they make a difference. Knowing you have sensitive staff can help."
She acknowledges that complaining about insensitive treatment can be difficult when you are so emotionally vulnerable, but says women should consider writing to their local Patient Advisory Liaison Service or to the chief executive of the hospital where they received treatment, even if it is several months later.
"If you write to the hospital, they have to respond," says Ruth. "It might not lead to a change straight away but if hospitals keep hearing the same things then it might mean things change."
As traumatic as my experience was, I take a lot of comfort from knowing that other prospective parents won't have to go through what we did.
The news of the change in policy on disposal of baby remains has given me a sense of closure and a realisation that although our little baby did not make it into the world, he or she has made a positive difference to the lives of others.
More on Parentdish: Miscarriage support
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