Words hurt... (new pg mentioned, sorry xxxx)

[MaevesMummy]

I dont know if anyone might be interested in a couple of things I have been doing.

When I first lost Maeve, at 22 (ish) weeks people kept calling her a miscarriage.
Now I dont want anyone to think I am saying Miscarriage is not painful- by god it is! Its awful that anyone should loose a baby at any stage. So awful.

But in my experience and my feelings (mine,again this is my opinion I dont expect people to agree...) it felt different loosing a baby at 22 weeks and did not feel right it should be called the same thing.
I have met many others who believe in the second tri, babies should have the right to be called still born or neonatal death, and staff should call them your baby, or by name.
I started a petition when I was really angry... so angry! Its getting there but we need more.
What I feel is more important is getting change on a local level though.
I spoke to the hospital and told them how their words hurt, they took it on board they were brilliant.
I have written letters to midwifery magazines.
https://www.rcm.org.uk/midwives/your-views/feedback-issue-2-2011/

I had an article published in The Practising Midwife recently.
It occurred to me that maybe if anyone else felt like me they might want to write to their local Maternity unit and tell them how they feel, and ask them not to use medical terminology when discussing with Parents.
I really feel it had a huge impact on my mental health and I got angry with staff, who were actually lovely. I just felt they did not accept the seriousness of our loss.
In my article I also mentioned that using the word "abortion" in any loss was truley terrible.
xxxxxxxxxxxxxx

 

[Andypanda6570]

I lost my baby 2 weeks ago to what they think is Trisomy 18 but I am still waiting for the results, I am in more pain than I have ever known, I can't imagine a person knowing this feeling of complete emptiness unless they have been through it. I hate when people say I can imagine how u feel, no u can't and I pray you never do I want to scream. In my opinion a loss is a loss no matter what , I lost my baby at 18 weeks does this mean the woman before me who lost hers at 6 weeks doesn't feel the same pain?I don't know. But I held my baby and for that I will be forever grateful/ I don't know what to do anymore, i don't want to try again cause my 3 boys are big and i am 40 and this pregnancy was a complete surprise, I didn't even know I wanted it until I got it
And I am almost positive it was a girl, but after this loss it doesn't really matter, I am trying so very hard not to sink into the abyss , but it's hard.
I don't know the answer to your post, all i know is this pain is real and I think a loss at any age has a profound effect. i just realized the other day that till the day i die I will have to visit my baby's grave, I still don't even have a name cause I don't have the results yet. I am just heartbroken

 

[Sarah&Ady]

I agree.. I hate Angelika being called a miscarriage

 

[BabyBoyle]

I was exactly the same..

After being given a tablet to stop hormones so my labour could be induced at 17wks, they gave me a leaflet on "chemical induced termination" or something, how insensitive, my little girl was wanted more than ANYTHING, and to be called a termination/abortion is disgusting....

Well done for writing articles hun.. people need to be made aware x

 

[Kelloggz187]

xx

 

[Imalia]

I actually had no complaints about the way my loss at 20 weeks was handled by the hospital here. Never once was miscarriage, abortion or termination used. They never referred to my baby as anything but "your baby" or "the baby" In a truly terrible situation the doctors, nurses and midwives were brilliant. Compassionate, caring, really going above and beyond what I would have expected, and from what I have read of other people's experiences.

Above all else, from the moment we found out our baby had died, I felt like we were in control. Doctors sat with us for hours going over our options and discussing what was right for us, and again, having read of others experiences I am again blown away by the care plan that has been put in place for my next pregnancy.

It was family and friends that cut me, they were the ones who called it a miscarriage, they were the ones who wouldn't aknowledge my baby existed, they were the ones who didn't see the point in a funeral or memorial services.

I wish you all could have been dealt with by the hospital with the same care and compassion I received. I wish you luck in changing things for those who were not shown such grace by those caring for them.

 

[RobenR]

I always hated how they referred to Elizabeth as a miscarriage. How when I showed up at the hospital, an unthinking nurse handed me a paper "all about your abortion." I couldn't do anything but cry. I saw her. I felt her. She was alive and then she was gone. To me, she has never been a miscarriage but because she was under 24 weeks, that is what they refer to her as.

I agree with you and the ladies on here.

 

[MaevesMummy]

I lost my baby 2 weeks ago to what they think is Trisomy 18 but I am still waiting for the results, I am in more pain than I have ever known, I can't imagine a person knowing this feeling of complete emptiness unless they have been through it. I hate when people say I can imagine how u feel, no u can't and I pray you never do I want to scream. In my opinion a loss is a loss no matter what , I lost my baby at 18 weeks does this mean the woman before me who lost hers at 6 weeks doesn't feel the same pain?I don't know. But I held my baby and for that I will be forever grateful/ I don't know what to do anymore, i don't want to try again cause my 3 boys are big and i am 40 and this pregnancy was a complete surprise, I didn't even know I wanted it until I got it
And I am almost positive it was a girl, but after this loss it doesn't really matter, I am trying so very hard not to sink into the abyss , but it's hard.
I don't know the answer to your post, all i know is this pain is real and I think a loss at any age has a profound effect. i just realized the other day that till the day i die I will have to visit my baby's grave, I still don't even have a name cause I don't have the results yet. I am just heartbroken

I am so sorry for what you have gone through, and you are right, I cant ever imagine this. It sounds so painful, and hard, Just sending you lots of love xxxxxxxxx
I just know that the pain I felt from early loss was different from loosing Maeve, I really dont deny that the pain was there and felt. Really the theme of telling health care providers how you feel runs from all spectrums of loss, if they did a good job tell them! If something hurt in some way also tell them. This is how people learn about bereavement care. I hope I didnt come accross wrong in my first post but this is the real message, communication is the key xxxxx

 

[MaevesMummy]

I actually had no complaints about the way my loss at 20 weeks was handled by the hospital here. Never once was miscarriage, abortion or termination used. They never referred to my baby as anything but "your baby" or "the baby" In a truly terrible situation the doctors, nurses and midwives were brilliant. Compassionate, caring, really going above and beyond what I would have expected, and from what I have read of other people's experiences.

Above all else, from the moment we found out our baby had died, I felt like we were in control. Doctors sat with us for hours going over our options and discussing what was right for us, and again, having read of others experiences I am again blown away by the care plan that has been put in place for my next pregnancy.

It was family and friends that cut me, they were the ones who called it a miscarriage, they were the ones who wouldn't aknowledge my baby existed, they were the ones who didn't see the point in a funeral or memorial services.

I wish you all could have been dealt with by the hospital with the same care and compassion I received. I wish you luck in changing things for those who were not shown such grace by those caring for them.

Its lovely to hear the good side to Imalia, well its never good but its good the way they treated you.
I also had good things dont get me wrong, I told them what was handled really well, they need to know that too. xxxxxxxxxxxxxxxx

 

[SassyLou]

I dont know if anyone might be interested in a couple of things I have been doing.

When I first lost Maeve, at 22 (ish) weeks people kept calling her a miscarriage.
Now I dont want anyone to think I am saying Miscarriage is not painful- by god it is! Its awful that anyone should loose a baby at any stage. So awful.

But in my experience and my feelings (mine,again this is my opinion I dont expect people to agree...) it felt different loosing a baby at 22 weeks and did not feel right it should be called the same thing.
I have met many others who believe in the second tri, babies should have the right to be called still born or neonatal death, and staff should call them your baby, or by name.
I started a petition when I was really angry... so angry! Its getting there but we need more.
What I feel is more important is getting change on a local level though.
I spoke to the hospital and told them how their words hurt, they took it on board they were brilliant.
I have written letters to midwifery magazines.
https://www.rcm.org.uk/midwives/your-views/feedback-issue-2-2011/

I had an article published in The Practising Midwife recently.
It occurred to me that maybe if anyone else felt like me they might want to write to their local Maternity unit and tell them how they feel, and ask them not to use medical terminology when discussing with Parents.
I really feel it had a huge impact on my mental health and I got angry with staff, who were actually lovely. I just felt they did not accept the seriousness of our loss.
In my article I also mentioned that using the word "abortion" in any loss was truley terrible.
xxxxxxxxxxxxxx

Couldn't agree more, we had one doctor refer to my son as 'products'. To be fair the rest of the staff were great and very supportive. They always refered to Archie as a baby.

Like you I also wished there were things I'd done, for example taken two blankets to wrap Archie in, one that we could have wrapped him in and brought home and one to leave him wrapped in. I also wish I'd been told to take a lot more photographs, for all we do have photos I wish I had close ups of his hands and feet. I am now looking at working with the head of womens services to develop a leaflet for parents with suggestions of things other bereaved parents wished they'd done.

As for writing I can't recommend this enough. We have sparked an investigation at our hospital. As I said the hospital treated us very well. However after we left Archie, they sent him to the wrong hospital, wrong department and treated him in a way that we neither consented to or would have wanted. At the moment there is an investigation on going hence my dealings with the head of womens services. I hope to get their policies changed and staff better trained so this can't happen again. I also intend long term to raise these issues with trusts around the country.

My advice is if you have a problem raise it. Things can't be changed if hospitals don't know there's a problem. But a word of warning (DH works in NHS and is a union rep) don't expect things to change, its rare for things to be changed. But if you don't try things definitely won't change.

Sorry for everyones loss, love to you all xxxx

 

[Andypanda6570]

I lost my baby 2 weeks ago to what they think is Trisomy 18 but I am still waiting for the results, I am in more pain than I have ever known, I can't imagine a person knowing this feeling of complete emptiness unless they have been through it. I hate when people say I can imagine how u feel, no u can't and I pray you never do I want to scream. In my opinion a loss is a loss no matter what , I lost my baby at 18 weeks does this mean the woman before me who lost hers at 6 weeks doesn't feel the same pain?I don't know. But I held my baby and for that I will be forever grateful/ I don't know what to do anymore, i don't want to try again cause my 3 boys are big and i am 40 and this pregnancy was a complete surprise, I didn't even know I wanted it until I got it
And I am almost positive it was a girl, but after this loss it doesn't really matter, I am trying so very hard not to sink into the abyss , but it's hard.
I don't know the answer to your post, all i know is this pain is real and I think a loss at any age has a profound effect. i just realized the other day that till the day i die I will have to visit my baby's grave, I still don't even have a name cause I don't have the results yet. I am just heartbroken

I am so sorry for what you have gone through, and you are right, I cant ever imagine this. It sounds so painful, and hard, Just sending you lots of love xxxxxxxxx
I just know that the pain I felt from early loss was different from loosing Maeve, I really dont deny that the pain was there and felt. Really the theme of telling health care providers how you feel runs from all spectrums of loss, if they did a good job tell them! If something hurt in some way also tell them. This is how people learn about bereavement care. I hope I didnt come accross wrong in my first post but this is the real message, communication is the key xxxxx

I am sorry if I posted rudely, I am just in so much pain right now. The baby died inside of me then the next day they prepared me for a D and E ??? I didn't know what that was and nobody told me I found out later. Anyway I went home and was supposed to go the hospital the next day and in the night I went into labor and had the baby in the bathroom I thought God was really punishing me for something
The nurses told me I had a guardian angel and I looked at them like there were nutzo then they explained what a D and E was and I couldn't believe it, it was horrible. So having my baby this way was dramatic but at least I got to hold my angel and bury my angel, if I would have had the D and E it would have been very different..
XOOXOX

 

[MaevesMummy]

I am sorry if I posted rudely, I am just in so much pain right now. The baby died inside of me then the next day they prepared me for a D and E ??? I didn't know what that was and nobody told me I found out later. Anyway I went home and was supposed to go the hospital the next day and in the night I went into labor and had the baby in the bathroom I thought God was really punishing me for something
The nurses told me I had a guardian angel and I looked at them like there were nutzo then they explained what a D and E was and I couldn't believe it, it was horrible. So having my baby this way was dramatic but at least I got to hold my angel and bury my angel, if I would have had the D and E it would have been very different..
XOOXOX [/QUOTE]
Oh no you were not rude, I just was so worried if I offended you.
I dont want it to look as if I am looking specifically at my problems, I am thinking that it can be applied across the whole of healthcare...
I am also glad that I got to hold my little girl, I dont want to appear ungrateful for the things that we did get. I am affraid our situations are so different, I can not even begin to imagine the pain you are in and I wont patronise you by trying to tell you I know how you feel either, I totally agree with you on that one.
Even someone in the exact same situation will feel so different, we are individuals.
I am so sorry for what you have been through and please dont be worried about expressing your opinions! Its important to hear peoples stories. xxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Starry Night]

I haven't had a second trimester loss but I fully agree with you -- it's so harsh to continue calling losses a 'miscarriage' once a woman actually has to deliver her baby. I don't know where to draw the line instead (I was 12 1/2 weeks but I don't mind the term 'miscarriage' for my loss). "Abortion" or "termination" should never be used at any stage! I also hate the term 'fetus'. I'm sure they use scientific terms for a reason but around the parents only 'baby' and 'loss' should be used. Scientific terms just make us feel worse or that no one cares.

I'm so sorry for all of your losses. No mother should have to go through that.

 

[MrsWez]

for you and Mauve. When I had Avalon at 20 weeks due to IC, they kept referencing to her a "fetus" or "late term miscarriage." I got no pictures, no baby, no condolences, nothing. I was told I wouldn't want to rememeber this as I was young and could go on to have more babies. She was my baby, she was perfect and she is my Avalon. To be told she doesn't count as person because she doesn't weight enough is soul destroying. I was treated so poorly, it boils my blood to think about it. I got to hold her for a 1/2 hour before they took her away and it was amazing.

I hope no one has to go through this. My heart goes out to anyone that has to go through a pregnancy loss.

 

[MaevesMummy]

I haven't had a second trimester loss but I fully agree with you -- it's so harsh to continue calling losses a 'miscarriage' once a woman actually has to deliver her baby. I don't know where to draw the line instead (I was 12 1/2 weeks but I don't mind the term 'miscarriage' for my loss). "Abortion" or "termination" should never be used at any stage! I also hate the term 'fetus'. I'm sure they use scientific terms for a reason but around the parents only 'baby' and 'loss' should be used. Scientific terms just make us feel worse or that no one cares.

I'm so sorry for all of your losses. No mother should have to go through that.

Quite right, Miscarriage is not a harsh word, it describes the pain.
But Fetus.... Thats our babies, its hard to here your precious baby at any stage being refered to as fetus! According to my hospital they only call it fetus when its inside you, when you deliver its a baby, but unfortunatly that hasnt always been the case, some people still called her fetus.
Yes Loss and baby really do mean more, and would make parents feel more understood and cared for. xxxxxxx

 

[SarahJane]

Amazing work, agree with sentiments around words used, always found this sad to hear.

I am really sorry to all for your sad losses

 

[Lottie86]

I hope it is ok me replying as I haven't been through what you ladies have but I agree with how distressing the terms they use are.

I'm currently awaiting genetic results for a rare chromosome abnormality (we have a 1 in 2 chance the baby will have it) and I have been horrifed by some of the things consultants have mentioned. Several consultants have said that said the hospital do not usually do terminations after 22wks (we are unlikely to get results back until a few days before 24 weeks) but due to the effects of the abnormality if this baby does have the rare chromosome abnormality we will be offered a termination.
I was shocked enough at the use of the word termination when the loss would be for a valid medical reason not because the baby wasn't wanted and just when I thought that was bad enough one then went on to say due to my gestation I'd have to have feticide carried out by injection
I was absolutely horrified by the use of the words termination and feticide and came home and absolutely broke my heart. It's a distressing enough time as it is having to seriously consider this heartbreaking decision without them using words like that.

I agree with you about the use of the word miscarriage too, it really upsets me that I could give birth at 23+6 and my baby be classed as a 'miscarriage' when if born the following day they would be classed as stillborn. When people hear the term miscarriage rightly or wrongly they will be thinking of people who lost babies early on with 'just' bleeding and some clots, they won't be thinking of someone having gone through labour, held their baby in their arms, had a funeral etc

I know there has to be a cut off for the term stillbirth (and wherever that cut off is it will always upset people who's babies were born literally just below that gestation) but when a reasonable amount of hospitals will now try and save 23 week old premature babies it seems awful that the cut off for the term stillbirth is still 24 weeks

to all of you xx

 

[babesx3]

to all.. i completely agree with u maevesmummy the terminology to our babies is so disrespectful...

I was very lucky too in that the hospital treated me and my baby as a still birth and we were given lots of care an attention....

for me i struggle with friends and family who either ignore what has happened to me, or belittle my loss... i don't think they understand what its like to give birth and hold your dead baby, and then be told u had a miscarriage... it most certainly didn;t feel like a miscarriage, it feels like a birth.....