Last night on channel 4 there was a half hour Dispatches program that sent my twitter feed into a frenzy. Admittedly my twitter feed is made up of an equal split between pregnant people and people who have experienced pregnancy loss, therefore both have been or could be affected by the issues raised, so it was likely to cause quite a stir.
The program was presented by Amanda Holden and looked at the way that babies bodies were dealt with following miscarriage. They discovered that, before 13weeks especially, many hospitals found it acceptable to have the babies incinerated with the days waste, without giving the parents any other options. A practice that, because of the program, is not happening any more. They also touched upon hospital organised burials and how the plots can be shared, and removal of tissues for postmortem, and how some hospitals keep these without parents permission.
This program however, got me thinking about my own experience, and how although those areas of my care was dealt with better, there were other parts of my care that left a lot to be desired.
When I lost my little girl I was 21 weeks along, by which point I think they realise that incineration isn’t an option. I was given a few options, which were discussed with me by a very flustered hospital chaplain who, after making us wait for her all day and being chased up by the nurses multiple times, burst in at 5pm announcing she had had a busy day and hadn’t had a chance to look at my notes yet so if I could just tell her why I was there… After I’d explained, feeling incredibly awkward and not sure how much she needed to know, she started to fill in the paperwork, asking me whether I’d like a communal burial or cremation, where you never get told when or where your baby is buried apart from that it would be in this one burial woodland, an individual burial or cremation where you don’t want to know when it is, or where you want to know the time and place but not come, or finally, the option I went for, attending. We chose a burial. We then asked where there are cemeterys, not having had anyone die and need to be buried, grandparents not living this way and all being cremated. She then told us she didn’t live in the area but travelled a long way to the hospital for work so she basically told us she didn’t know. She told us that most people go for the big city centre one, but then she promptly told us that the children’s area is “tacky” with lots of wind chimes and pinwheels and that she would recommend us going and having a look first. That left us with the woodland burial which we had already looked round and discounted as it was all a bit too natural, plots weren’t permanently marked, or even in rows, so I have no idea how they keep exact track of the plots. She looked at us a bit blankly at this point, clearly she didn’t have a clue what to say about where we should try, until thankfully mum remembered our local parish cemetery, the chaplain didn’t look sure at all, filling me with so much confidence that I went online and looked up the phone number for the parish myself once she’d gone, writing it down for the nurses to pass on to her.
When I was being discharged a nurse asked if we had sorted everything to do with the funeral and we explained we were less than impressed with the chaplains conduct and professionalism, and the nurse did infact switch our care to a different chaplain, who atleast when I talked to her on the phone started with I’m sorry for your loss. Words the other chaplain never even uttered. However, it wasn’t until I met a third chaplain, when I turned up to pick up the footprints and photos the hospital had taken, that he mentioned the baby remembrance book that is at the back of the hospital chapel, he also told us about remembrance services they hold there for babies who are lost, facts that although entirely relevant, were not even touched upon by the previous two chaplains.
Having said all this I was incredibly grateful for what the hospital did sort out. They organised for my daughter to be taken to a funeral director and the funeral director, completely funded by the hospital, organised the funeral that we wanted in the cemetery we wanted and the lady, again, was very sympathetic.
On the whole, though they clearly have things in place, I didn’t feel like anyone was aware of everything, I think I may have finally got to the bottom of what was available to me, but on the day I needed things spelt out simply and I needed words of sympathy, I got a bumbling chaplain who didn’t fill me with any confidence that I would be able to get what I wanted for my daughter.
My experience of labour was just as confusing and isolating. I was told they always induce patients at the weekend, I found out I’d lost the baby on the Wednesday and was given a tablet and told to come back on the Saturday, by which point, she had been dead inside me for a week. I can understand that that was how they guarantee a room is available on the gynaecology ward, however, there are less staff at the weekend, leading, as I found out, to care that was pretty much non existant. I turned up on the Saturday and was greeted by a lovely nurse who, though clearly didn’t know what to say, put an arm around me and explained what would happen. She then put a tablet inside me and left. Apart from the nurses occasionally popping their heads round the door to see if my waters had broken yet, or coming in every 6 hours to give me another tablet, I didn’t see anyone all day.
Baring in mind that at 21weeks, with my first child I had never been to an antenatal class in my life, I had no idea about breathing through contractions, apart from what I’d watched on One Born Every Minute, which honestly just sounds like a lot of mooing to me. I had been told to hold off painkillers until I really needed them as the pain would get a lot worse, I have a relatively high pain threshold so waited until past midnight when the contractions were really bad, and I was throwing myself around the room not knowing what to do, the pain was so bad, we asked for something for the pain and were told they’d get a doctor to come and give me an injection. No doctor showed up. We asked again and the doctor had been called to an emergency and there was only one doctor on that night. So I was left, on my own, in agony. I tried to walk to the toilet, my fiancé supported my entire body weight the entire way and I passed out on the bathroom floor from the pain. The crash button was pressed and they got me back on my bed, a nurse talked me through the next contraction, which was better, then she left. The next contraction was just as bad, then the gas and air turned up, after 3 breaths on it I passed out and within seconds of coming round I told them baby was coming. No one had even thought to check. I had been in labour for over 12hours and apart from putting the tablet in once in that time, no one was checking what was happening down there. I delivered her in her sack and she was instantly taken away to be cleaned up and she was brought back. At which time everyone left and no one came back until 9am the next morning. The whole experience was so traumatic and it was like I was renting a room from the hospital. When you go into labour with a live baby they will keep an eye on you, but to me atleast, it seemed like they just wanted me to deliver and leave, as if it wasn’t a birth, as if it wasn’t painful, as if I didn’t have all the maternal hormones running around me and no baby to take home, as if I didn’t need more emotional support than a mother with a happy ending.
The nurse came in to discharge me within half an hour of taking my daughter away. She gave me a weeks worth of tablets to stop infection, and told me not to have sex for four weeks and to avoid swimming pools. I was then sent on my merry way. In the weeks that followed I picked up on a few things I reckon she should have warned me about, that the bleeding didn’t stop any time soon, that it was heavy for weeks, then got lighter to only get heavier again. I didn’t return to normal for months. Then there was the fact I started lactating. Obviously my body had been pumped full of labour hormones and my body thought I had a baby to feed. It all made sense, but being only halfway through my pregnancy I didn’t even consider it. When my boobs started to leak, and hurt like bees were constantly stinging them I worked out for myself what was happening, but I had had no warning. Surely these simple things should be mentioned before a patient leaves?
When I left the hospital having delivered my daughter and had to let a nurse take her away from me, for me to never hold again, I was given nothing about what to do now. I had noticed when I read the leaflet about post-mortems that there were support numbers in the back, but the leaflet was taken away with my forms, never to be seen again. I left that hospital with empty arms and no one told me there was anywhere for me to turn. I spent weeks and months getting through it slowly, feeling completely on my own. Hating everyone who was pregnant, turning the radio and TV off when the royal babies birth was mentioned and still to this day I cannot watch One Born Every Minute. I felt like an awful person for feeling like that. I spent months not knowing where to talk to people or where to find others. I didn’t want to google it incase something I didn’t want to read popped up. I didn’t want to have to search for help. All I wanted was a list of safe places that I could turn to. It wasn’t until I was pregnant with my rainbow baby that the answer popped up on my Facebook news feed. A group called “Sweet Dreams Our Angels” a group for mothers like me. A group where everyone understood, where they shared their stories and where people admitted they were jealous of pregnant people too. Suddenly, after six months of feeling completely isolated, I knew I was normal, that I was hurting, but that it was NORMAL. I don’t know if it is hospital policy to give leaflets and they forgot or maybe ran out when it came to me, but it’s a dangerous place to leave someone. Grieving like they’ve never grieved before and completely isolated. If I hadn’t had my family around me I wouldn’t have got through it.
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