Today I have been talking to a wonderful group of ladies
On Twitter and on Facebook about bereavement
About baby loss
And what happens when a baby dies
After a baby dies
As with many things in the UK
It seems to be something of a postcode lottery
What kind of care you are given
After a baby dies
As well as being different depending on where you live
Care also seems to vary depending on how
And where
Your baby dies
I would love to know what happened to you when your child or baby died
This is what happened to me
To us
After our baby died
After our beautiful Baby Tilda died
Matilda Mae died on Saturday 2nd February 2013
I found her dead in her cot a little after half past ten
My husband stayed with Tilda
I called 999
The operator stayed on the line with us
Until the paramedics and then the ambulance arrived
Everyone who came to our house
Showed us enormous compassion and respect
The policeman would not let us see Esther and William
We were not allowed in their room
I did not ask why
I did not want to know
I just wanted someone to tell me
There was a dreadful mistake
And my beautiful baby was still alive
At some point David and I were asked to leave
The room where Tilda lay
We went downstairs to wait
Until a police woman arrived to tell us what we, of course, already knew
Our darling daughter was dead
She was to be taken to our local hospital
To their morgue
Where she would stay until she could be transported to Great Ormond Street Hospital
For a post mortem
I was told that I could travel with Tilda
In the ambulance
And I tried
I really tried
But I couldn’t do it
It was just too hard
We were taken in a police car instead
Following the ambulance
To the doors of A&E
We arrived at the hospital
And were taken through A&E to a side room
And there we waited with a police officer
A young father himself
With tears in his eyes
We were questioned by another policeman
Notes upon notes were taken
Recording everything that we said
We were asked if we wanted to see Tilda
If we wanted to say goodbye
Of course we did
Of course we did
She was in a bay in a room in the hospital
With the curtain pulled around
They had wrapped her in a blanket
Placed her in a basket
We were allowed to say goodbye
But we were not once ever left alone
There was always someone listening
Someone watching
We were taken back to the tiny room
Where we waited with the sad policeman
Until we were allowed to go home
We were given a book from The Lullaby Trust
That I clutched to me all the way home
We were told that social services would be in touch
We were not told when or why
It did not matter
They never came
Apart from one very reluctant doctor
No one ever came
The doctor came
At our request
The night that Tilda died
To check that Esther and William were okay
They were
We knew that they were
We had just a couple of hours now
Until Esther and William would be awake for the day
And we had no idea what to do
I opened that booklet from The Lullaby Trust
And with tears and physical pain
Such throbbing, violent pain
I read how to tell your other children
That your baby has died
And using the guidance from the one booklet we had been given
We told our beautiful twins that their baby sister had died
Friends and family rallied round
There was an outpouring of support from the blogging world
And we waited and waited for someone
Anyone real
To make contact and see how we were
Nobody did
Not a single professional soul
Not the hospital
Not the promised social services
Not the police
No GP
No midwife
No one
Not until the coroner called
To talk us through the post mortem
And tell us how to register a death
We were left
With not a clue what to do
We had to choose and contact a funeral home
Arrange our 9 month old daughters funeral
With not a single jot of support
We had to decide what to do with her things
We had to try and carry on for our twins
We did not know what we were supposed to do
We did not know how
What we could do
Where we could go
We did not know what to do
I always expected someone to come
For Esther and for William
If not for us
But no one ever did
We were asked if we wanted Tilda embalmed
Told it would preserve her a little as the funeral was so far away
We agreed but then were told that babies cannot be embalmed
We had been given the wrong information
It was not a choice we could make
She had changed so much
I ran out the room
David was so brave
He stayed and put her special things in her casket
While I cowered in a corner
There was no one to help us
I will never forgive myself for not saying a proper goodbye
Nobody helped us
Not long after Tilda died
My wisdom tooth became affected and I had to go to the dentist
I was caught off guard when they asked about maternity exemption
I did have a baby
But my baby had died
There were lots of little things like that
People you assumed would know
Who did not know
That you had to tell
Over and over again
We had to tell people we thought might know
That our baby daughter had died
Health visitors
Doctors
Dentists
Nursery school
It was a year after Tilda died
That I accidentally found out about bereavement counselling
Family counselling
We could all attend
I never did anything about it though
But I did attend some sessions on my own
Before then I had known I was not coping
But I did not know where to turn
It has been two years now since Matilda died
She should have just turned three
We are all still struggling
Different ways on different days
I always wonder when we face something new
With Esther and William
Is this normal or is this grief?
I wonder how different things might be
If we had been offered professional support
I suffered a miscarriage
After Tilda was lost
We were alone after that loss too
I did not have any counselling
After the twins premature birth
Nothing was offered to me
I wonder if it is because people can see
How strong and capable we are
Perhaps the resources are given
To people who need them more?
I wonder if it has all been a miscommunication
And we just slipped through a loop hole somehow?
But then I hear the tales of others
Experiences similar to my own
And I realise that something needs to be done
There are things that can be done
Things that I can help make happen
And I have to start with my experiences
And what I would have liked to have happen
And I can use my voice, my blog
To set the wheels in motion
For better bereavement care
For parents with babies up in the sky
Born in all places
At all ages and stages
If I can do something
To help someone like me
Then I will
I want to help others
Not be alone in the dark
Left waiting for someone
That never comes
After a baby dies
As with many things in the UK
It seems to be something of a postcode lottery
What kind of care you are given
After a baby dies
As well as being different depending on where you live
Care also seems to vary depending on how
And where
Your baby dies
I would love to know what happened to you when your child or baby died
That seems so wrong that you and your family never got any support. I always assumed when terrible things like this happen you do! It is so sad and so wrong x
My care after my miscarriage was non existent. I was given a leaflet, and told to come back if the bleeding was too much. no emotional support at all.
We had great care immediately after Finley died. 3 days in hospital making memories, a vsit from a bereavement midwife (whose hours are now so reduced she is not able to see many people at all)., 4 weeks of visits by our community midwife, a letter from a health visitor to offer suport if we wished. 3 calls on the phone by our GP to see how we were. An offer for me to see the bereavement counsellor.
But we had nothing baz and i could go to together. there was nothing for him either. he was offered anger management group! he wasn’t suicidal enough to get 1:1 counselling. we found a cruse volunteer, but the only person he could match him up with was an old man who wife had died. They had nothing in common.
Our relationship eventually after 5 years broke. We ended up paying £65 an hour for sometime with a psychologist who’d see us together.
Such a terrible loss so powerfully described. Sending you and your family love, am so sorry it’s not enough. You are so inspirational and your voice is truly heard xx
The discussions today are so, so sad Jennie. That we lost our babies is bad enough, but to not be given the support we need, to have to fight for it, is unacceptable. We will improve things for other families, in Tilda’s memory and in Hugo’s. After today, I am more passionate than ever. xxx
Me too x Thank you x
I have never experienced that. I can only imagine that is a very hard and disturbing thing to happen to anyone. I heard about this blog on Twinkly diaries Linky Party
This breaks my heart. Reliving that night through your words makes it so painful to imagine how you must have felt, and the lack of support is shocking.
In terms of what happened to me, when I lost my baby through miscarriage I too remember with terrible clarity how little support we received and how awful my hospital experience was. I won’t detail it here, although I’m happy to provide you with the full story separately should it be useful to you, but it is sadly a story of medical neglect, lack of compassion and lack of support.
I think it is wonderful of you to consider championing this cause, and I wish you every success in making changes.
Xx
Where can I tell you about my 4 year old son who died 2 years ago? C x
you can email me jennie@edspire.co.uk or leave a comment here x x x x
I am so sorry for your loss x
I have not lost a child, but my heart goes out to you for your loss. I am truly shocked that there was not more official ‘support’, nor explanation of processes, or things being handled by all parties in a kind/considerate way. The NHS/police should have a blueprint of dealing with childloss in a supportive way, it seems certain procedures are geared towards ‘suspicious circumstances’, rather than as in your case (and most I am sure) the loss is by loving parents who need to be treated with kindness, patience and full support.
I am going to blog about our experience after Rhianna died shall tag you when I do Xxxx
Thank you Kerry x x x x
I can barely read all your words because it is so painful but is familiar to me too.
We lost our little girl Ellie 3 months after you and she was only 3 weeks old. Our experiences immediately after were quite similar except the ambulance came and took her straight to the nearest a&e and I went along with her still in my pyjamas. They (many many drs and nurses) tried and tried for I don’t know, 20-30 mins, to bring her back whilst I was sat there. I half looked over, then couldn’t look, didn’t know what to do or say, just sat there waiting and waiting for her to wake up. They eventually took me to the adjacent bay and said did I want them to keep trying or not, I couldn’t think – I didn’t want to make that decision, I kept assuming my husband would arrive any minute almost forgetting he was waiting for my mum in law to come and look after my eldest (2.5) who had woken up when I found my daughter not breathing. So they carried on but then I thought are they hurting her even more so I agreed for them to stop. Still I didn’t cry. Just total disbelief.
Not long after my husband did arrive, I am not sure who brought him in now.
My husband had to ring my mum and my dad separately to tell them. Still before 8am on Friday morning I think it was. My dad may have been in work already I am not sure.
We had to wait a while for the paediatrician and police and coroner to arrive. But the policeman stayed largely silent and the lovely paediatrician did most of the talking, we were never felt under suspicion at all. After all the note taking we were allowed to see Ellie again, and were told we would be able to come back the next day to see her as well if we wanted (my birthday). Which we did with my mum, and mum in law. A member of the a&e staff took us down and I think someone else from the mortuary both came in with us. I think they did ask if we wanted to be left alone but we said it was ok for them to stay. I held her in her blanket most of the time, she was in a Moses basket.
After that no we never really did get any support. My GP rang me the next week as I had been seeing her for antenatal depression and the surgery had all been told, it sounded like it was a new process when similar things happen the whole surgery were informed so the patients relatives didn’t have to keep explaining, however of course the receptionist doesn’t automatically know that when you ring to make an appointment and they tell you nothing for 3 weeks so you burst into tears and tell them your baby died 3 days ago. I went in to see my GP and she was almost in tears herself. She said counselling was available whenever I needed it whether that was then or in a month or 2 years. I wasn’t sure what kind of counselling they offered, I assumed something specific to bereavement but I wasn’t ready, I didn’t “have time”, I wanted to be with my eldest as much as possible and he was very clingy at the best of times. A bereavement midwife contacted me from my hospital where we had Ellie, but this was because she was classed as a neonatal death, under 28 days, Most deaths at that age seem to be due to still birth or baby born very poorly, I didn’t fit into either category, and although very kind I didn’t really feel any benefit in talking to her, and I didn’t feel she was offering me any support that was helpful to be truthful. SANDS was brought up a bit too, but again we didn’t fit into their category really. I did contact Lullaby Trust now and again mostly by email, as I am hard of hearing the offer of counselling over the phone wasn’t something I could take up. Mostly I just wanted to bury my head in the sand I guess.
My HV for my eldest came to see me about 3 times and that was lovely but I was aware really it wasn’t her job, she just came out to see me because she knew me. If I had lost my eldest I wouldn’t have really had any contact from HV I guess. My HV recent halls got transferred to another town and have struggled to get any support for my eldest since then, despite turning up at the HV clinic once sobbing. We moved house last summer and stayed with my old GP for a bit, she asked the new HV team to contact me twice but they never did. When in finally got in touch myself, apparently our notes had not been transferred over. So another few weeks wait and on and on, 18 months of waiting basically just to have an ear to listen to whilst I worry about my 3, now 4.5, yr old. It doesn’t seem to occur to them that if someone had come to speak to me a year ago I wouldn’t have the same issues / worries now.
15 months passed (& a missed miscarriage and surgery for that) and I went back to work last June only to breakdown 6 weeks in and only then did I say to my GP, OK could I be referred to counselling, and she stated I would have the time because she signed me off work. This took 4/5 months to start which I was told was “good”. By which time I had taken redundancy from work otherwise I would have had to go though the sickness disciplinary process or return. Not specifically bereavement counselling, I established a while ago if I wanted that I would need to pay privately and I can’t really afford to pay when I am not sure when I can get my son babysat. I got offered 6 sessions fortunately could do those whilst my son was in preschool. It helped to have someone to offload / waffle on to I guess but like you I still feel that there is a big gap somewhere that families affected by SIDS are overlooked by the NHS in particular.
Going back a bit the coroner, police, funeral side of things. I too was shocked at no one supporting us to sort the funeral, we had to sort it ourselves. In the end my mother in law picked the funeral home in her town, and we just went along with it. We are not religious so had no clue about what to do for the ceremony. They recommended a minister who came along prepared with what I guess were typical Christian services and when we mentioned we didn’t want a religious ceremony really, he said he had never conducted a non religious one for a baby before though was quite happy to do it, but it didn’t leave much for him to say. The funeral staff also just assumed we didn’t want the sleep suit back that she had been dressed in (by myself and the paediatrician) after she was pronounced dead. My mum in law took in an outfit we had chosen to the funeral home and didn’t think to ask when we would get the other sleep suit back. We didn’t think to ask. They didn’t ask us. A few months later and I was expecting it to maybe have somehow gone back to the coroner and they would return it with the other clothes she had been wearing at the time of death, and I started querying. It turned out the funeral staff had just put the sleep suit in the little coffin with her, they just assumed that is what we would want. I was so upset. Why they didn’t ask us I do not know. It was her first outfit (& my son’s), & that is why I wanted it back. It never occurred to me they would put additional things in the coffin without being instructed to.
The coroner also was meant to be writing a new booklet to be given to parents such as ourselves immediately after an unexpected baby or child loss, with brief information that might be helpful as we were given lots and lots of leaflets all at once, half of which we still haven’t looked at now. We were asked to be involved in it, with Ellie’s name meant to be acknowledged on it. The lady from the police coroner spoke at length about it when we saw her, but we have not heard anything about it since. Also trying to find out the date of the inquest and what would happen, was like getting blood out of stone. The coroner had to take some unexpected time off work, and nobody else knew anything about what was happening and we couldn’t get anyone to answer the phone for months (which is even worse when you are deaf and hate using the phone anyway).
I am so grateful we never felt under suspicion and the paediatrician was so kind to us, but there is definitely a lack of support following a SIDS loss.
I am pregnant again now (nearly 7 months) & just been visited by the CONI scheme rep in our area, but we will deal mostly with a new Health Visitor now. We have been offered a 3rd scan at 32 weeks but I felt like I had to push for that. I am sure my GP or old HV indicated we could be seen or scanned every week if wanted to. Sadly the resources don’t stretch to that it seems. I have been panicking a bit because this baby doesn’t kick very much even though I have felt movement since early on just never very much. I am just getting told all babies and all pregnancies are different really. But everything that is different I think is that an indication something might be wrong?
Xxxx
I read your blog all the time, and never know what to say although there are so many things I WANT to say. Let me tell you our family’s little story of loss.
My brother was born dead at 19w, in 1999. I was 14 and there when my mum’s waters broke. She was so brave. He wastoo early to count as a stillbirth, but too late to be anything other than a tiny little person. The hospital were wonderful with my parents (Peterborough), and let them stay with him for hours. He went to Addenbrookes for a postmortem (which was optional at that early stage, but my parents wanted to know if there was any blame – there wasn’t) and then they came home to tell their other 6 children what had happened. The hospital gave them two grainy polaroid photos and a blanket. The doctor didn’t come. I think the midwife came, more out of guilt because she’d not sent my mum for a scan the week before when she couldn’t find a heartbeat. The vicar knew – I think the hospital let him know – and he came often to offer my mum spiritual support. The funeral directors were wonderful. They made him a coffin for nothing, because he was so small. We had a proper funeral.
But after that, nothing. She had to go for lots of hospital appointments because of other gynae problems, and had two more early losses, but it wasn’t until she was having my youngest sister that they talked about what happened to my brother. When she reached her due date, she was forced into an induction “unless she wanted her baby to die”, which I think is the most callous thing anyone could say to a grieving, frightened woman.
I think she got through it because they never hid it from us. We were much older than Esther and William (we were 20, 14, 12, 11, 9 and 7) and we grieved together. My youngest sister, who was born 18 months later, knows all about him and how we miss him even though we didn’t know him.
It pains me how hit and miss bereavement care is, how taboo the whole subject is. A friend miscarried last year and said afterwards “You don’t realise how many women it affects until it happens to you”.
Pingback: After a Baby Dies | A Journey Of Footsteps
I find it so hard to believe that no one from any service came to help/support in any way, I think I just assumed that there would be something, at least offered even if you had no wanted to take it-shocking really! Something definitely needs to be done doesn’t it, especially in the early days when it must be so raw and you really must have no idea how to cope with anything, hopefully in the near future there will be more help for those who have to deal with such pain xx
I find it so hard to believe that no one from any service came to help/support in any way, I think I just assumed that there would be something, at least offered even if you had no wanted to take it-shocking really! Something definitely needs to be done doesn’t it, especially in the early days when it must be so raw and you really must have no idea how to cope with anything, hopefully in the near future there will be more help for those who have to deal with such pain xx
Jennie, I am so sorry that you had this terrible dis-service from our healthcare. For you to have to go through the worst possible thing a parent should never have to go through and to then get absolutely no support from the professionals afterwards, is quite simply disgusting. I truly hope that by having these discussions and making people aware of the lack of support, there will be more and more awareness about this and something will be done to offer a service to parents who have to go through this trauma. Thank you so much for linking up with #TwinklyTuesday this week xx