What’s it really like… to be a family where a baby has died?
This is the most heartbreaking post I have ever published on Cardiff Mummy Says, and I feel truly humbled to be entrusted to share these beautiful words with you.
Cardiff mum Naomi Stocks got in touch to ask if she could share her experience of life as a family where a child has died.
Her son Aneurin should have been turning five this week, but sadly died when he was a few days old, following complications during the pregnancy and after he was born.
Naomi, who is married to Dan and has a three-year-old son Idris (pictured above), is sharing her story in support of other families who have been through a similar bereavement, and to raise awareness of the work of neonatal intensive care units.
Please do show her your support in the comments section below, on the Cardiff Mummy Says Facebook page or by tweeting me on @cardiffmummy
Tell us about your family
We are a family of four, but you will only see three of us. My partner, Dan and I, have been together for 17 years this year. He’s Welsh, I’m English. Neither of us are Cardiffians but both of our boys are. We lived in London and Manchester before settling in lovely Cardiff nearly eight years ago.
We have two boys, Aneurin Fred and Idris Lloyd. Aneurin should be five in April and Idris has just turned three.
What is an average day like for your family?
Like most families it’s a juggle of work, childcare and family life. We don’t have any family nearby, so it’s all on my partner and me. I’ve recently upped my working days to five, while my partner works part time, giving him a day off with Idris (which I’m very jealous about!)
Idris is at Welsh nursery four days a week. So nursery days are a mad whirl of drop off and pick-ups. Weekends are most definitely family time. We all love our local parks and libraries and spend most of our time in one or t’other; and Idris is a keen connoisseur of babyccinos!
When did you realise there was something wrong in your pregnancy with Aneurin?
We had the screening for Downs (we went into it incredibly blithely, I can tell you) and got a phone call summoning us to ‘discuss the results’. Dan was working in Carmarthen at that point, and the fact they insisted we go straight away should have been an indication of how serious it all was. This was at about 15 weeks. It turned out we had a one in five chance of a chromosomal disorder, we had an amnio (which was a whole world of stress and uncertainty) before getting the all-clear. We got that on a Friday; on the Monday, we went in for our 20 week scan. We had this with the Fetal Medicine team, who had done the amnio, we thought just so they could discharge us back to midwife care, but I think they had suspicions more problems might arise. They were right and at the 20 week scan it became apparent they were serious problems. We were eventually diagnosed with severe IUGR (intrauterine growth restriction) due to a placental dysfunction. Things were very risky, and we lived from scan to scan. I was in and out of hospital until I was admitted for the last few weeks of my pregnancy.
How did you feel when he was born?
Aneurin was born on 24th April. I had a C-section. We basically waited until the balance of risk shifted from ‘safer in’ to ‘safer out’. At 30 weeks it was felt we’d chanced our luck too long.
I’ll be honest, I was terrified. No-one knew if he’d survive the delivery, or if he would be ‘big’ enough to survive after the delivery.
When we were told he’d been safely delivered, there are simply no words to describe how it felt, but I’ll try: Euphoric. Relieved. Over the moon.
I have to be honest as a ‘birth’ I felt very detached from the whole experience, I spent most of it (until I’d been told Aneurin was alive) talking about nights out in my hometown with the anaesthetist who had done some training in Hull.
I had to wait a few hours before I could go and see him in Neonatal. They brought down a picture of him (below), which is still one of my most treasured pictures.
Can you tell us about his life?
What kind of support did you get after Aneurin died?
We were really lucky in lots of ways (which I think may seem an odd way to think of it). His death had been an outcome we were acutely aware was a real risk from 20 weeks. It doesn’t mean it was easier, and it certainly didn’t feel like I had expected it to feel, but it wasn’t a bolt out of the blue. It was something we knew could happen. Although once he was born I definitely thought we were on ‘safer’ ground.
All the staff at the Neonatal Unit at University Hospital Wales in Cardiff, and the Fetal Medicine team and the Antenatal Assessment team were AMAZING both before, during and after. I would walk through fire for them all.
Our family and friends were as supportive as they could be. My employer and colleagues were supportive. And we had Cardiff Sands. They were such a lifeline. To sit in a room with other people who ‘knew’ made me realise I wasn’t going mad.
We were also lucky to get counselling from the NHS. We had this together and it was invaluable. It gave us a space to discuss what had happened and find the best ways for us to reassemble our life and helped us process the grief. Five years on some of the techniques and observations from counselling are still incredibly helpful.
How did you process the grief?
By just getting up every day and putting one foot in front of the other. There’s a line in Sleepless in Seattle which has always resonated where the Tom Hanks character says that you start off having to remind yourself to breath in and out and slowly you don’t have to. You do have to re-learn how to live your life, and I found I’m not the same person I was (some changes for the better, some not).
Are there any changes you would have made to the support and care offered to parents in this situation?
I always feel like we got the ‘gold standard’ and I wish other parents got that. It helped that we had established relationships with the clinicians supporting us.
I’ve heard real horror stories of people not getting support from their families, friends and employers, I wish people understood a bit more about losing a child so that they can help people going through it. There’s been lots of awareness raising in the last few years but we still have a long way to go.
I also don’t think people understand that this is a grief you live with forever. I’m sure some people think we were ‘fixed’ once Idris was born. Our lives are forever intertwined with our loss and the gap in our family.
Did you get any extra support during your pregnancy with Idris, and how was that experience of being pregnant?
We did. We were back under the care of our wonderful Fetal Medicine team; ‘our’ consultant, ‘our’ midwives. We didn’t have to regale them with what had happened previously. They understood that certain milestones (e.g. 20 week scan) would be particularly hard and cared for us with real empathy and sensitivity.
When we came out of what I called the ‘Aneurin bubble’, things were a bit more hit and miss. I left an antenatal class in tears, after a midwife had challenged my assertion that I HAD to have a C-section. (I did, my previous one was a ‘classical C-section’ which ruled out any chance of vaginal birth). It was strange how a number of healthcare professionals were a bit ‘scared’ of Aneurin. He is our beautiful boy, nothing to be scared of.
How much does Idris know, or will he know, about his brother?
He calls him his ‘bro-bro’ and can identify him in pictures. He regularly tells us ‘I love my bro-bro’ often totally spontaneously, which melts my heart. He’s also recently told me ‘My bro-bro loves me’ and ‘I miss my bro-bro’. (The last one broke my heart).
We go to his ‘bro-bro’s garden’ (his grave at Western Cemetery) and he will pick the flowers we take.
We tell him that his bro-bro is in our hearts and our minds, and that he’s always with us.
Obviously as he gets older, we’ll understand more of why his bro-bro isn’t here, but for us it’s been really important that he’s always part of the conversation.
Five years on, how do you feel now?
The grief isn’t etched on my face as it once was, but it remains etched in my heart. We’ve learnt to live with the grief in a way that means it doesn’t dominate. It hasn’t gone away, and I’m not the same person I was before having and losing Aneurin, but I’m better at living with it.
That’s not to say that there aren’t moments/days/weeks in some cases where it is as bad as it was immediately after he died. Certain dates, anniversaries, events are harder than the run of the mill parts of the year, and that’s to be expected I guess.
As well as being sad about not having Aneurin with us, I’m sad about all the other things we’ve ‘lost’; the sense of being a ‘normal’ family; the opportunity for Idris is to have a living sibling (we don’t want to take the risk of another pregnancy); all the people Aneurin would have known, loved and have brought into our family; and the loss of a ‘normal’ pregnancy.
Who or what has helped/supported you over the years?
I cannot say it enough times or in enough ways but the care we received from the healthcare teams throughout the pregnancy, Aneurin’s life and following his death really does continue to have a daily impact on us. The care and support really was exemplary; it has allowed us to focus on our grief and not ‘what ifs?’. It really has made such a difference.
Cardiff and Newport Sands has also been absolutely vital. Having people who ‘know’ and ‘get it’ to talk to, makes a huge difference. I’m forever inspired by them, and in particular Heatherjane and Dave who helped establish the group over 10 years ago. Their continued friendship and support amazes me. They never forget anniversaries or birthdays, and are awesome. They, like everyone in the group, really are special.
What would you most like people to know about being parent to a baby who has died?
First thing is not to be scared of our babies. Saying nothing is FAR worse and upsetting than potentially saying what you may perceive as the ‘wrong’ thing. Say their names, say you’re sorry and then let us direct the conversation. We know if we are in the place where we want to talk or don’t. This is essential when it’s just happened.
But five years on, if you meet me and I tell you, equally don’t just brush it under the carpet. It might have happened five years ago, and you might think that it is all okay now but it isn’t.
I think people often think you are ‘fixed’ if you go on to have another child and that everything is fine once the new child arrives (that’s understandable on one level, I thought that once!) but you aren’t. It can’t ever be fixed. My family has one member of it missing. That’s forever.
What advice would you give to other families going through a similar experience?
Give yourself the time and space that you need to process what has happened. Do what feels right for you; for some people that might mean telling people what’s happened over and over again to anyone who will listen but some people won’t want to talk about it much, and there’s all the options in between. There’s no wrong or right answer, only what is right for you and your family.
Whatever you are feeling; you aren’t going mad! I’ll be pretty sure that someone else who has lost a child has felt that emotion or response too. That’s why I think it’s really helpful to talk to someone who has been through it; they can validate that you aren’t crazy, even if it feels like you are. There are so many ways you can reach out to people who have been through it, you may have a friend or family member or you can come to a support meeting or join an online forum or ring a helpline. There’s usually a way that will suit you and your needs.
If you think you are struggling and finding it too overwhelming, talk to your GP. Get help.
Appreciate it will take some time before you can get a balance back. You can’t rush the grieving process. But it will not be as dark as it can be forever more.
We smile, we laugh, we are happy and I never thought we’d get to that place.
Do whatever you want to mark your child’s life. Do what feels right for you and yours immediately after and going forward. Prioritise your needs and your immediate family and don’t care what others think.
What support can friends/family give to someone who has experienced the death of a baby?
Don’t forget the Dads! Don’t forget the Dads! Don’t forget the Dads! The number of people who would ask Dan how I was doing and not ask him; and that seems to be reflected in the stories of most people I know who have been through something similar.
Take your cues from the parents. Don’t presume for example they won’t want to see your kids (some might, some might not). If in doubt, ask.
Do practical stuff. Take round food they can stick in the oven. Offer to look after their other children so they can have some time together. Go to the shops and get the shopping in.
But most of all; be there. Don’t avoid them; DON’T CROSS THE ROAD WHEN YOU SEE THEM!!!!! Reach out to them. Listen to them. And remember any awkwardness you may feel at having to talk to them is dwarfed by their loss. I can’t say it enough times, the worst thing is people ignoring it. There’s nothing you can say that will make the situation worse.
Why is speaking about Aneurin important to you?
It’s one of the few things I can do for him now. I can’t play with him, teach him to read, cook for him, or keep him safe; but I can keep his memory alive. I can say ‘he was here and he mattered’. For me, talking about him is fixing his presence on the world a bit more firmly. I have to do that for him, because he isn’t here to do it for himself.
It’s also to help break the taboo around baby loss. I feel that because I can talk openly about it, that it’s my duty and obligation to do so. I do it on behalf of all those parents who might not be able to or might not want to. All our children are important.
For help and support, visit the SANDs (Stillbirth and neo-natal death charity) website or if you are local, Cardiff Sands.
To make a donation in memory of Aneurin, you can do so here. This is the fundraising link for Cardiff and Newport Sands, who support families as well as fund training for healthcare staff and provide bereavement suites in hospitals.
You can read other posts in the What it’s really like…. series here.
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Well said Naomi. I’m so sorry for your loss of your lovely Aneurin, he will always be with you. Our son would have been three this week if he’d have got to his due date, but instead he decided to arrive at 23+5. Your description of the medical team is correct. They are superstars. I can remember the way they went on that journey with us, all the way. We had 18 days in Southmead NICU (we lived near Chippenham then), commuting every day initially until they called us back in very early one day and asked us to stay overnight from then. We knew things weren’t going perfectly. In the end there was no reason for his birth, and no reason for his death, Alfie was just too small.
It’s a hard journey and we don’t forget. I wear his hand or footprint in my jewellery every day, my husband has him, moments old, as the backscreen for his phone.
And now we have our daughter who was born less than twelve months after Alfie. She will never know him but will know his story and our love for him.
So thank you to you and your family for sharing and I hope someone reading will benefit from your words.
This is so sad but I am sure will bring comfort to anyone going through this. It shows that there is a way through and life does go on although never the same. It is wonderful that Aneurin remains part of your family too xxx