A couple of days ago I was involved in a twitter chat with a lot of lovely woman about what happens, and the support you get when your baby dies in the UK.
I then read Jennie’s post on Bereavement Support After A Baby Dies and rather than write a whole blog post in a comment I thought it was better to write our story here.
If you have followed our blog or read anything about Rhianna you will know that we found out she died on the 20th March 2012, when I went for a routine check at the midwife and they found no heartbeat. You can read all about Rhianna’s Story here. After my midwife tried a few times, and another midwife tried I was sent to the hospital associated with the birth centre to have a scan.
I called Mr L and we went off to be told the worst news.
I have never had an issue with the care that we received at the hospital to be honest, they dealt with us brilliantly, there were a couple of communication issues, which did not make the process of giving birth to Rhianna easy, we thought we were going in the next day to give birth in actual fact I was just taking a pill and being told to wait. If nothing happened within 48 hours then I would be going back in. Which is what happened in the end with me. Now three years down the line, it did cause us stress. It was stress that really didn’t need to be there, and it was down to a communication issue, it just hadn’t been explained properly, or we just didn’t listen properly. I really can’t say. Trying to take all the information in at the time, is so hard.
You are sitting in that room and you have just been told there is no heartbeat for your baby, but you still have to give birth. From that point on I don’t think Mr L and I really took anything in, and in some ways I wish we had been told to sit tight to call someone and get them to process the information for us. As there was so much said to us. If one of our parents or my sister were there, they may have taken that information in a lot better, and we wouldn’t have left that day thinking we were going back to hospital to give birth the next day, when we obviously weren’t.
It isn’t a luxury that everyone has, to have a friend or a family member to take that information in for you but it is something we could have done, but we didn’t think about it and it wasn’t suggested. But in hindsight, it would have been so helpful, and would have probably prevented the confusion to start with.
The care we received at the hospital was fantastic, we had the midwife that delivered Baba and a gorgeous trainee midwife, who I constantly felt for, but was an utter star. She had so much empathy and was so sad for us, that in a way it really helped. You could see how much it affected her, and how much she felt for us and it did actually help, you could tell they cared, and that was the main thing.
The hospital helped us to decide whether we wanted Rhianna to see the vicar, which we did, they let us have as much time as we wanted, and yes we were in the labour ward, but we were down a long corridor in a private suite, and couldn’t hear any other babies and didn’t really go near them when we left.
Rhianna was in a cold cot, so she could stay with us but it didn’t stop the changes from when she was born as she was so tiny, only one night changed her dramatically. But it was still our decision we never felt pressured to leave.
When we did leave we were given a box, with her details on a card, a card from the hospital vicar, photos and hand and foot prints all things that we didn’t know where happening, and a book for Baba. All lovely touches that we still treasure now.
We were asked if we wanted to have her buried or cremated at home, and moved to a funeral home near us, or if we wanted her funeral to be at the hospital or if we wanted to leave her there…
For a hospital cremation, without her family, on her own.
We were utterly horrified.
And it was an adamant no!
While we were having Rhianna my parents had got details about a funeral for her, and had spoken to a local funeral home who collected Rhianna the afternoon that we left hospital as I really didn’t want her there on her own for long, and they made sure she wasn’t.
I was told I would have a check in a few weeks and my notes would be sent to the doctors, and we were free to go if we wanted, and we did want to, to be honest, we wanted to get back to Baba.
There was nothing awful that happened.
There was one thing that really upset us, but the midwife was tied and it was the fact that at 23 weeks and 5 days Rhianna wasn’t in the 24 weeks “bracket” so we left with no birth certificate, and we couldn’t register her death. In the world of records, in the world of our family history paper work she never existed, in Mr L’s paper trace, he never had a daughter, she will always be written on my records via the paperwork, she will never be written on his. Paperwork has a horrible way to stick a knife in when no one is watching. I gave birth to her, she had ten fingers, ten toes, hair, eyes, ears and a heart, just a heart that wasn’t beating at the time she was born so she isn’t entitled to a certificate to say she was here!
It totally broke us, and was something we really were not prepared for! We were shocked that there would never be a record for her, via paper work, she was not a being. It was a silent statement that tore us apart.
So we walked that walk, the lonely walk out of a maternity ward, not smiling, no car seat, no cooing, no smiles from the team or the other parents. We walked out in silence, no words, no baby nothing.
And we waited.
And my midwife called, regularly, and flowers arrived from friends and family, and my midwife.
And my breast milk arrived, no one told me that would happen, again it was a cruel twist of my body that no one prepared me for, or talked to me about, I didn’t breastfeed Baba and it wasn’t something I even thought about. But it hurt, it was another reminder that my baby should be here and she wasn’t, and it was something that should have really been talked to me about, it was something I dealt with as I knew no better. Now I know that I could have been prescribed something to stop that from even happening, which to be fair would have been nice. But it wasn’t so I dealt with it, together as Mr L and I were learning to do.
I had phone calls, from the midwife, from the birth centre, and regular check ins for a couple of weeks, Mr L got told to look after me.
There was no phone call from the doctor, no interaction from the hospital, other than that we sat and waited.
Waited to bury our little girl and waited for the pain to go away.
The funeral home helped us talk to Baba some more about his sister, they let us organise a very special funeral for Rhianna, one that wasn’t in the church but was just by her grave side. My friends found a perfect verse for her service. We didn’t write anything ourselves we let the vicar do it all.
There was nothing we could say.
Nothing we could write.
Baba’s preschool, helped him massively, talked to him, read his book. Let him be normal, but opened the paths for him to talk.
We were so grateful to them.
The Health Visitor turned up to see us, to discuss Rhianna’s labour plans and to bring my red book over. Mr L told her she had been born, she apologised for being late, he told her Rhianna had died. She was mortified, no one had told her. No one had passed on my notes, she had no clue.
After the initial embarrassment and complete and utter shock from us, she gave us some details of places to contact.
We tried a couple, Mr L didn’t want to see SANDS so that one was stopped he wasn’t ready, we called CRUSE and the initial chat seemed like it was just the place we needed, the older lady we got assigned was rude, and very abrupt and made me sad on my first contact with her, we then cut all ties.
I had my six-week check after giving birth, everything physically was fine, I was sent home. No offer of counselling, no checking that her daddy was ok, nothing, just a sorry, it must be awful, but your young you can have another and off I went.
We never wanted tests done on Rhianna at the time, everyone was quite certain she had the cord around her neck, it later transpired that my placenta had failed, we had that confirmed at our meeting with the consultant in July after she died. The first contact we had with the hospital.
They agreed a plan of action for future babies, aspirin and extra checks, I had to fight to get a 23 week scan, there was no chance that I would go through any future babies without them being scanned that week. I remember being given an odd look at the request but it was granted, and it did happen with Boo.
But still no counselling, still no support we were told it was unfortunate, and sent on our way.
From the NHS we never got any support, we never got offered counselling, nor myself or Mr L. We have however had massive support from individuals within the NHS, my midwife was amazing at the time, she was amazing when I fell pregnant and had a miscarriage and she was amazing when I was pregnant with Boo. But she has been there, she has had miscarriages and she understands the pain, the worry and the stress. It makes a big difference.
We have had amazing support from family and friends, people who are close enough to tell us they don’t understand and they don’t know what to say or ones that are so close and are living the same life as us and show us it is possible to carry on.
I got a massive amount of support from the online community, the blogging world and they stood with me, the day Rhianna died and the day we buried her. And were there in the dead of the night when others were sleeping and I was up again. And have been there over the years.
But our biggest support came from Saying Goodbye and Zoe, we went to one of their services soon after loosing Rhianna and it was something that we really needed, to realise that we aren’t alone, that there are so many people who have lost their children. And to know that you are standing in a room, where every single baby loss matters. Every single hug you receive is genuine and everyone understands. Saying Goodbye has got us through some bad points in our grief, with the help of them and Growing You they really supported me through my future pregnancies, something that wasn’t offered anywhere else.
When I fell pregnant again, I was given a sticker on my notes, a little heart that indicated that I had lost a child. The doctors, and midwives I saw were fantastic they always reassured me, they always checked me and they always listened to my worries. But that is where the support stopped, again no counselling was offered, no checking on me or Mr L’s mental health was thought about and we were just left to it. To worry about every move, pain, non movement, and stress that comes with every pregnancy.
When we had Boo he was kept in for being grunty, it broke my heart, I was told he was healthy but I was still worried, again he was looked after well but no one checked on us. No one asked if we were ok. It was tough.
When you give birth to a baby after loosing a baby you are torn, you are worried to be happy and don’t want to be sad. You miss your baby that should be there, and you want to protect your new baby. It is an odd experience a happy but torn one, and I think somewhere along the line someone should ask if you are ok. They didn’t, Saying Goodbye did.
But the difference is they have lived it, they have experienced it. To me that is the essential thing that is missing, no one can advise, or look after a mother, and father that have lost a child, unless they have lost a child. No one understands their pain, like a person living their pain.
And until that is understood there are always going to be issues, time doesn’t heal, it doesn’t matter that you can have another, it doesn’t get easier, and it doesn’t all stop a couple of months down the line.
Nothing heals you, nothing stops it and anything can start it anywhere, anywhen, and somewhere somehow the people who deal with you at the moment your child dies, need to know where to help you, it may not be them, that is fine but they need to know where to send you, who to offer as places that could help you.
And from our experience admin needs to be up to date, accurate and dealt with quickly.
Firstly we wanted a record of Rhianna, we didn’t want to walk out with no birth certificate, and her not existing (I know that is a whole other issue)
Secondly we didn’t want to be told she could just be left to be buried by the hospital, the image of a mass cremation came to mind and it was sickening
Thirdly every person who ever deals with myself, or Mr L should know we lost a daughter. That our daughter died, it can and will affect us for life. The Health Visitor should have known, it should be on both our records!
And fourthly it isn’t hard to ask if we are ok!