This episode focuses on the sensitive topic of what not to say to parents who have experienced the loss of a baby. Siobhan and David share their personal experiences and insights regarding the comments that can be hurtful or dismissive during such a painful time. They discuss how certain phrases, often meant to comfort, can instead diminish the significance of their loss and highlight the importance of empathy in conversations about grief. The couple reflects on the stark contrast between negative and supportive comments, emphasizing that well-meaning intentions do not always translate into helpful words. As they navigate through various examples, they aim to create awareness that can foster more compassionate communication in the face of tragedy.

Takeaways:

• The importance of knowing what not to say to someone grieving a baby loss.
• Comments that attempt to minimize the loss can be incredibly hurtful and damaging.
• Grieving parents often want their child's memory to be acknowledged and celebrated.
• Support during grief should focus on being present and listening rather than offering clichés.
• Assumptions about a grieving person's feelings or situation can lead to further isolation.
• It's crucial to recognize that every loss is personal and should be treated with empathy.

Links referenced in this episode:

• www.kikideville.com

Welcome to life after Baby Loss, a podcast brought to you by Grace in action.

I'm Siobhan, Grace's mum.

And together with David, Grace's dad, we'll be exploring life after loss.

Hello and welcome.

Welcome to this episode of our podcast, life after baby Loss.

Yeah, I am David, and with me is Siobhan.

And with us also is Halo the dog.

So there might be some background noise that I probably won't be able to get rid of because it's the dichotomy between cute and annoying, and I don't really know how to deal with it.

We could shut him out the room, but then he'll bark.

So at the moment, we're making do with him chewing a cardboard box.

Yeah.

So the next couple of episodes are one that we recorded a little while ago, and we recorded it in one big chunk, but actually listening back to it and editing it, we have decided to split it into two.

So the episodes.

The first episode that you're about to listen to now is called what not to say.

And the second episode is what you could say instead.

Instead.

Yeah.

The other thing to mention is that.

So we recorded this.

How long ago did we record this?

Mmm, a while back, I think about four or five years ago.

Four or five?

Sure.

It wasn't that long.

Well, the thing is, it's still absolutely relevant.

Okay, so we recorded this a while back.

Since then, actually, this very week, I've got a book by someone called.

By author and singer called Kiki DeVille.

And she's written a book called what not to say.

Now, I haven't read it yet, so I don't know how closely it aligns with some of the stuff that we're gonna say, but I've seen some of the feedback, and it looks fantastic.

And what's interesting to note is that it's nothing necessarily for people who have suffered a loss.

It's for the people around them, people who need to support them, people who don't know what to say.

So I'm going to put a link to that book in the show notes, and I'm actually looking forward to getting into it myself.

But enough of that.

Let's get on with the show.

Here is life after baby loss.

So today, I suppose we could start with what's on your mind, Siobhan?

Where do you want to start?

There's lots of things in my mind.

I think I'd like to talk about something that I saw today on Facebook, which was a really interesting post about the things people say when your baby dies.

Funnily enough, I saw a post today at Parrot, and it was actually to do with widows and widowers and things that people say to them when their partners die.

And someone did a post aimed at religious people, because religious people can have a certain set of things they say which aren't helpful.

So I thought that was quite interesting, that that's what you want to talk about.

Yes.

Well, we've had some religious comments, haven't we?

Let's set out.

I mean, would you describe yourself as religious to begin with?

Yes.

What does that mean?

I suppose I would.

I have a faith.

I practice my faith.

Yeah.

When people ask me if I was religious, I used to say, no, I'm christian.

Yes, quite.

I'm not sure I like the term religious, but that's a whole different podcast.

Yeah, but we've definitely had that kind of sentiment that, you know, God's looking after them and I.

Blah, blah, blah.

And I just think, well, yeah, maybe.

But actually I want to be looking after Grace.

Yeah, yeah, sure.

I'd love.

I love the idea of being in heaven and going to heaven when you die.

And it sounds great, but, you know, actually I wanted some time on earth with her first, really more than just her womb life, so.

Yeah, that one gets me.

I also think it's interesting how when something like this happens, some people find it draws them closer to their religion and some people find it draws them.

It pushes them away from their religion.

Yes.

Well, there's another podcast for us on another day.

We'll come back to the religion issue.

I think we should do the planning session on another time.

Should I tell you about the post that I saw?

Because you haven't actually seen it.

No, I haven't.

Go for it.

Yeah.

It was shared by a grieving Facebook page that I follow.

And the post in question is by portraits by Melanie.

And Melanie is a photographer and she has photographed lots of women who've had losses.

And the women are holding up chalkboards with comments written on that people have said to them.

Now there are two sets of photos.

Some are black and white and some are in colour.

And the black and white photos, the comments are negative comments, comments that were taken badly, made the listener feel horrible.

You know, just.

Just not the kind of things that you really want to hear when your baby's died.

And the ones in colour are helpful comments, positive comments, things that uplifted people, soothed their souls, helped them in their grief.

And it's a very, very stark representation of what I think is actually a really tricky thing to deal with on both sides.

Yeah.

And I really like the visual element of it and the contrast between the black and white photos and the colour photos.

What did the visual element of it do for you?

It really highlighted how it made me feel when I had comments that were negative and ones that weren't.

But I mean, as opposed to, I mean, seeing the pictures of the women as opposed to just reading the comments.

Was that it was reflected in their faces as well.

Okay, so you could see, you could see like, their expressions are completely different and their expressions mirror how I imagine they felt on hearing those comments.

I'll give you an example.

Yeah, she's in a better place.

So as a religious person, is that not true?

I said to you, that's a whole different podcast, man.

But I mean, it's like.

But surely if you claim a faith and someone says that to you, you should go.

Actually, that's quite comforting.

I think that's a massive assumption to make.

And I also think that if you are religious, yes, there may be some comfort to draw from that.

But actually, for me, that idea that she might be in a place that, you know, is where she's being looked after, where there is no sickness, where she can't be cold or hungry or, or any of those things, yes, that brings me some kind of comfort.

But the implication is that there's a better place than being with your own mother.

And that I really struggle with.

I think the way I see it is it may be a better place, but you're talking about the b plan.

Yes, exactly.

I signed up for plan a.

Which was.

Exactly, which was that child is in my arms.

Yeah, yeah, exactly.

I mean, interestingly, on that photo, the comment underneath is, was I not good enough?

Yeah, you know, you have no idea.

And yes, your faith may bring you some comfort thinking about that, but you have no idea what another person is thinking.

And you should not assume that they're going to take your comment in the way in which you intend it.

You just, you shouldn't have seen that.

Shall I tell you some more?

At least you didn't have to get to know her and then lose her.

Oh my God.

So someone said, so I was doing a show and I was telling someone about grace.

And so to give, to put it in perspective, the person was quite young and they said, well, at least you didn't get to know her, you know, at least.

And I'm like, but actually that's b's because we did get to know her.

Exactly.

She had such a strong personality in her womb.

Life.

I mean, in that sense, we were lucky.

We had.

We had grace for 41 weeks of her womb life.

And, you know, she had a real personality.

All of our children, and this is.

This is my thing, all of our children have had a personality in their womb lives, which we've seen in them as babies.

Yes, exactly.

We've seen manifested.

Yeah.

Outside the womb.

I mean, the amount of times you've looked at one of the children while, you know, when they were very young babies, at what they were doing in their sleep and going, oh, that's what they were doing in the room.

It's all different.

They're not all doing the same.

No, exactly.

Like Alana has this way of.

And she still does it to her teddy, actually, when she goes to sleep and she kind of rubs her hands around it.

And I think she was about two weeks old and she did that on my shoulder and a guy nearly dropped her, actually, because I was so shocked.

And I was like, oh, my God.

That feeling of her just, like, rubbing her.

Not quite rubbing her fingers together, but like grabbing where she was kind of grabbing onto the material on my shoulder.

And I realised that's what she'd been doing in my.

In my womb.

It was a kind of a tickling kind of feeling and.

Yeah.

And I just.

The feeling was exactly the same.

And Grace had a way of moving which caught the nerve that ran down the inside of my left leg.

She had that personality, you know, and as did Kira and Elissa had different things as well.

And I think it's also ollocks because.

So, number one, yeah, you do get to know them.

Not totality of the way you want to, but you get to know.

And one of the things I always regret, actually, is because I was so freaked out by having another child that I didn't have interact with her as much as I wanted to and I wished I had.

But also, whether you spent all that time getting to them or not, that doesn't take into account the fact that your body has been through a trauma that your mind has been.

It's got nothing to, you know, that is a significant factor.

You did get to know your child, but.

Yeah.

Enough said.

Next one.

Okay.

At least you weren't that pregnant.

What the.

I know.

Pregnant is proximity with.

Yeah.

Were you only a bit pregnant?

We were a lot pregnant.

I mean, it's ridiculous.

For goodness sake.

This is one of the things that really gets my go, you know, it doesn't matter if you were five weeks in one day and you just found out yesterday or like us, you were 41, gone 41 weeks.

You have in that moment when you find out you're pregnant, your brain, I mean, it can go to all sorts of places.

All sorts of places.

Like when we found out we were pregnant with Alyssa, both of us, our brains went to holy fork.

That's the next three years being absolutely knackered.

Just so you know, Siobhan really enjoys the tv show the good place.

And the main character is meant to be in heaven, so she can't swear.

So whenever she tries to say a certain f word, it comes out as fork.

And Siobhan has adopted this really annoying, but I can't get her out of it.

So anyway, you have to do that.

Back to the matter of more importance.

Yeah, it really annoys me because, I mean, you go through a whole heap of thoughts and sometimes you don't.

Sometimes those thoughts are more immediate, like, oh, that means here comes the morning sickness.

Or it could mean anything, you know?

You don't know.

You have no idea what that pregnancy and what that baby meant to that person.

That person could have spent three years trying for a baby.

That person could have not wanted to have a baby and not wanted to be pregnant and spent the last three weeks trying to wrap their head around having a baby and was just becoming, you know, getting to a point where they accepted it when, unfortunately, their baby died.

You have no idea.

So that kind of a comment is never, ever going to be helpful, ever.

Shut it.

Keep it to yourself.

Oh, this one really breaks my heart.

He is so handsome.

Good start.

I like that.

Yeah, yeah.

Something I always say to midwives and I'm doing talks, is they will say, well, I don't know what to say.

And I'm like, say stuff you would say about a living baby.

Look, he's got Daddy's fingers.

Yes, exactly like grace.

Her hands.

One of the pictures we've got actually on our wall is a picture of her, an enlarged, like, canvas thing of her.

One of her hands.

Her fingers were exactly the same shape and the nails exactly the same shape as David's.

Like, exactly.

None of the other girls hands are like that.

They're all a bit of a mix.

Although I think Kira might have a similar shape to your mum's hands, but graces are exactly the same shape as David's.

And it was one of the first things that struck me when I was looking at her.

And that's that whole thing about normalising, isn't it?

Yeah, just normalize it.

So that was a good start.

He's so handsome.

It's how it carries on.

That's really sad.

At least you would never know he had a heart condition.

What the hell do you do that?

I don't know.

Because he had a heart condition.

That's part of who he was.

Don't deny it.

Yeah.

How does that make it better?

Exactly.

Looks like he.

And also, if your child has died, people are gonna know and people might go, what happened?

I had a heart condition.

It doesn't matter whether he looks like people.

You know what?

That one just plain makes no sense.

No, no.

Some of those comments, I can see the logic, even though it's nonsense, but there's no logic in that one.

Oh, at least you're still young.

You can try again.

Can you?

You don't know that.

No, exactly.

Again.

And also, how can you make any assumptions?

And also, what difference does that make?

You might not want to try again.

You might be so traumatized, you may not want another baby.

Well, we know that the journey of subsequent pregnancy is a difficult one and just a bit.

One of the things that happened when we realized we were pregnant with Alyssa, one of the reasons we were like, oh, no.

Was because we knew from experience that we had a horrific ten months ahead of.

We can talk about subsequent journeys another time.

But also, I talk a lot of bereavement conferences with midwives.

And one of the things I've often said is having another baby may fulfill my desire for a baby, but it doesn't fulfil my desire for Grace.

So you're telling me I can get pregnant again while I'm mourning Grace?

How the hell does that help me at that moment?

Yeah.

And it also, in an.

In another way, I feel like it negates Grace's presence.

She was real.

She was real.

She existed.

She was alive.

Well, at least you're young enough to try again.

I often think of Dan and Jade Hill.

Who?

Heroes.

Massive heroes.

And from, you know, they've got how many children?

So I'm not sure.

Sorry guys.

Loads of sorry guys.

We kind of lost count.

They just keep breeding.

And why not?

They're beautiful.

Yeah.

You're saying only beautiful people should be allowed to breed?

Is that what you're saying?

Well, Dan and Jade, you're officially in the beauty charts there.

But multiple sod, you know that's not why.

I know, but multiple pregnancies, multiple losses.

Multiple losses.

So to tell someone, at least, you know, you're young, you can go again.

That it means nothing, it's insulting, and it just shows a lack of intelligence.

If not anything else?

And while we're talking about Dan and Jade, so big love to Isabella.

Okay, what about this one, then?

You aren't going to cry on me, are you?

The.

I know, I know, but who said so?

Who said that?

I have no idea.

This doesn't.

You have no idea.

This is somebody, a picture of this lady holding up the board.

You aren't going to cry on me, are you?

I would.

That person would get a big fork off from me.

I'd be.

Or maybe even nothing.

I think that would just be a turnaround and walk away job.

That, see, that depends.

That depends on where I am.

Because there's a days when I can take the worst things and just think there are days, especially as I've got older, where my temper is a lot shorter.

But that, I'm really sorry.

That is all about the person talking and not about the person grieving.

That is completely self centered and that is not from any place of trying to help, but getting it wrong.

And do you know what, which a.

Lot of the other comments are, if that's, they're from a heartfelt place, but they're just, you know, a little bit misplaced, perhaps.

That is just selfish and that person.

Can fork off, you know, don't need you in my life move on to next.

We won't spend any more time talking about them.

Oh, yeah.

You can try again.

It's not a big deal.

Okay, that's, that's fairly similar, isn't it?

It's not a big deal.

What are you saying about my baby?

You say my baby was not a big deal.

At least you weren't that far along.

Again, similar.

And I often find that people have this thing about miscarriage and they think, well, you know, it's not the same.

And it's not the same.

But there is still a loss.

There is still a loss of a future that you immediately probably started planning when you got pregnant.

There's still a trauma to the body.

There's still.

I had this conversation with my mum right now.

She had a miscarriage before she had me.

And it's something I grew up knowing about, actually.

She, in some ways, she was quite vocal about it.

And one day she did say, you know, I don't, I find it quite hard to understand sometimes why women get so upset.

You know, I had my miscarriage and I just kind of got on with it.

And I thought, well, that's great.

Well, that's great for you.

And I'm glad that that's how it worked for you.

And in a way, actually, she, because she had that miscarriage before she had me.

In fact, if that pregnancy had gone to terminal, I wouldn't be sitting here.

It always made me feel quite special that my older sibling, you know, without my older sibling dying.

I suppose when you think about it like that, I wouldn't be here.

That was, made me feel quite special.

Anyway, I digress.

And I said to my mom, you know, that's great.

I'm really glad that for you it wasn't a total brain fart.

But actually, for a lot of women it is.

And you cannot, you cannot prescribe to someone else.

No, you can't, because you don't know what that pregnancy means to that, to that person.

And a miscarriage is different to a stillbirth because it's a different number of weeks.

In my head, that's the only difference.

Were you 20 weeks?

Technically, it's a miscarriage.

Were you 32 weeks?

Technically, it's a stillbirth.

Who cares?

It's your baby.

Your baby died.

I don't care if you were four weeks or you were 40 weeks.

It's your baby that died.

And it's what it means to you.

That's what's important.

Hear that?

Oh, this one's really sad.

I'm not sure what I think about this.

At least you were able to get pregnant.

I'm assuming that's a comment from someone who hasn't been able to get business.

Is that someone speaking from a place of their own grief?

Yes, exactly.

And so it's just tragic.

It is tragic, but I think there's, it's, I don't know the comment.

There's a little comment underneath.

It says, two of my babies died.

So the lady who received that comment lost two babies.

So it didn't, I mean, you know.

I feel yddeh I feel really, really, really such a huge depth of sorrow and all sorts of emotions that sometimes I find quite hard to name for women who want to have children and who aren't able to have children.

And I've always been really aware of feeling very blessed that we haven't had any problems, actually, along those lines at all.

However, that doesn't take away from the fact that our daughter died.

No, not at all.

Our daughter died also.

It's true.

You can't say, oh, well, you should feel grateful that that will, there's no hierarchy of grief.

There's no hierarchy of grief.

There's no hierarchy.

It's just crap.

Whichever way you cut it, it's just crap.

Okay, a couple more for you.

I'm sorry you can't have children.

What does that even mean?

What?

I don't know.

I don't understand.

I assume there was some problem or some genetic problem, maybe, or.

I don't know.

I'm making assumptions now, which I'm saying.

Okay, so let's make it.

Let's give that person the benefit of the doubt.

That doesn't address the fact that someone.

You've had children.

Yes, exactly.

And you're sitting in the middle of your own grief.

It doesn't help that present situation.

I'm sorry you can't have children.

I'm sorry your baby died.

Not that you can't have children, you mean.

I'm just.

You're just sorry the baby died?

Deal with what's in front of you.

What's in front of you is someone's baby's died.

That's you.

Yeah.

Just remember, she doesn't replace him.

What?

I think that must be with this.

With a subsequent pregnancy.

No, no, maybe it says in brackets after stillbirth.

Are they trying to say that you shouldn't get caught up in mourning your dead child to the detriment of your life child?

Because I see that a lot, and I've had someone intimate to me.

Intimate?

No.

How about direct challenge?

Yeah, I think it was the fact that.

Oh, you always post about grace on facebook.

Why don't you post about your other children?

And I thought, well, a.

I do, but.

Bjdehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehehe my other children are here.

I see them every day.

I get to talk to them.

My dead child isn't so, you know.

You don't really get to talk to them.

To be fair.

They don't give you a word.

I talk at them and they choose to ignore me, and my authority dwindles to nothing.

But they're here.

I get to celebrate them every day.

Allow me to celebrate my child that isn't here.

And what makes you think.

What makes you think that because one of my children died, I am not loving and attending to my living children just because you can't see it.

Yes.

Yes.

All right, last one.

There had to be something wrong with your baby.

I think there's only one response to that, which would be, there's got to be something wrong with you, mate.

Buff.

Don'T I?

Why would you even say it?

Why would you even say it?

Why would you even.

If I was going to do, like, a little emoji or something now, it would be like a face palm.

I mean, seriously, why would you assume anything along those lines?

Anything.

I mean, babies die for all sorts of reasons.

Yes, sometimes there are things wrong with them, sometimes there aren't.

There was absolutely nothing wrong with grace.

But also, if you don't know, shut down.

Sometimes it's medical negligence.

I mean, sometimes it's tragic accidents, sometimes, unfortunately, there is something wrong sometimes.

And actually, in a lot of cases, we have no idea why.

Do you think that might bring some comfort?

And this is the thing that gets me about most of the posts, is that the person speaking imagines that they will bring some comfort.

Do you know what?

When your baby dies, there is nothing that you can say to me that is going to bring me any comfort, because I am at the bottom, I'm at rock bottom, I'm at the lowest of the low.

There is absolutely nothing you can say to me that's going to bring me any comfort.

The only thing you can do for me is to be with me, sit with me in my grief.

Come and join me at the bottom of the hole and sit with me and cuddle me while I cry.

We had a midwife called Sophie, and she was leading the shift.

Well, it was the shift after Grace died, and she came in to introduce herself and she sat with us and she cried and she didn't cry in a way that we had to support her.

It was a cry of pure solidarity and humanity.

And she was with us and it was beautiful.

Yeah.

In that place, she sat with us and it wasn't, in a way.

And the most important thing was we didn't have to support her.

No, that crying was completely supportive.

Yes.

And that was amazing.

But your priest came to visit us.

Yeah.

And he said something which actually stayed with me because I remember Father Chris.

Father Chris.

Because what happened, Grace, was, you know, the consultant said to us, don't have bother looking for stats online, you won't find them.

This doesn't happen.

Basically, we had a midwife who said, 25 years, I've never heard of anything like this.

So it wasn't anything wrong with her.

It was whatever it was, we don't know why it happened.

And I remember talking to Father Chris and I said, you know, this is not something you could ever have prepared for.

And he goes, but you have prepared for it.

And I said, have we?

How?

And he goes, because you talk to each other and that talking is that ability to communicate is the one thing that's going to get you through this.

So here's my wider interpretation of what he said, was that our marriage and our relationship that we'd been building was the preparation.

Unbeknownst to us for dealing with such a horrible, horrible, horrible, tragic thing.

And I think that's one of the key things that got us through that first year was our ability to talk to each other.

And we both knew where we were at, that it wasn't me supporting you as a man.

It was us supporting each other.

Goodness.

Thank goodness.

Can I just say, and this is something a good friend of mine, Chris Binney, says, and his son Henry was actually still born 3 hours before Grace on another, you know, other side of the country.

And he speaks a lot on something he said once that caught me, and he said, if you have a sentence that begins with the words, at least don't say it.

And I think the moment you got.

Used to, at least there is no.

You know, you're saying.

That's how you know you're saying the wrong thing.

Yeah, the sentence starts with at least.

Yeah, that's a really good point.

So quite a long list there of things what not to say.

And we'll see you for the next episode where we talk about things that you could say.

Till then, take care of yourselves.

Peace, love, and strengthen.