Kym & Mark’s story – For Alfie, born 19th December 2015

There is never a good stage in life to find yourself dealing with the death of your baby, it is a tragedy that no amount of age and experience can prepare you for.  But, there is no doubt, that for a young couple only in their 20s, facing the unexpected loss of your child is life-shattering.  This is the situation Kym and Mark found themselves in back in 2015 when their baby Alfie died just 36 hours after birth.

In Kym’s heartbreaking opening words to their story, they found themselves “waved off from the hospital with a leaflet and a memory box, no answers about what had gone wrong and no support.”

Alfie was Kym and Mark’s first baby, and everything had gone as expected up to their due date when Kym’s waters broke.  When she didn’t then go into labour, the decision was made to induce her.  Again, this all seemed quite normal and everything was going as expected up until the point that Alfie was born at 12:33pm on 19th December 2015.

Kym and Mark had been given no indication of anything being a concern. But as soon as Alfie was born it was clear something was very wrong.  He was briefly shown to Kym and Mark but was whisked away to be resuscitated before being taken to the NICU where he lived for just 36 hours.

Kym continues the story: “we just got told on the morning of the 20th December that he wasn’t going to survive and we didn’t really know why.  We obviously knew he was poorly, but we didn’t know he was going to die.  Up to that point, no-one had told us he was going to die. We just heard the words, ‘we will prepare the quiet room’ and from that point you know you’re not getting good news – with the words that followed our world was turned upside down.  Alfie was on life support, and we were just told that it had to be turned off and that he wouldn’t survive.”

In time, it would become clear that there had been negligence in Alfie’s care during the birth and this is perhaps why, at the time he died, details from the medical staff were slim and there was very little support offered.

Whilst Kym and Mark weren’t getting the answers they wanted from the doctors, fortunately, the team of NICU nurses were incredible in their care of Alfie as well as the couple. Kym remembers one of them scribbling the word Petals on one of the leaflets they had been given.  She didn’t take this information in at the time but after leaving the hospital to go and stay with her parents (returning to their own home which they had lovingly prepared for a new baby was initially too painful) Kym found herself googling “what to do when your baby dies” and this triggered the memory of the NICU nurse’s scribbled note, and she got in touch.

When I ask Kym how she was feeling at the time of making that initial call to Petals she says: “Honestly, at that stage, I wasn’t feeling anything, it was just desperation because of the weight of what I was carrying – I just thought I can’t live with this, I need someone to help me get through this.  Alfie had died on the 20th December and I was discharged on 21st and at that point hospital wise, it was very much just a case of ‘ok bye, hopefully, we will see you again soon to have another baby’, you know it was just a ‘try again’ type thing.

And you know, we were both just in our 20s and that is a lot to go through and process when you are so young.  I’d never had to organise a funeral before or anything like that and at the same time we were waiting for a post-mortem and we had no support from the hospital. Having Petals to talk through all of that with, even the practical stuff, became so important.  They helped so much.”

So often at Petals, we see male partners initially coming to counselling to support their wife or girlfriend and Kym says she was initially unsure if Mark would be willing to go to counselling but having spoken to Petals she knew it would benefit them both to come along so she jokes; “I just kind of ploughed on with it, booked the session and told him that the counsellor had said it would be good if we both come and hoped he agreed!”

Also finding himself in a dark place, Mark was willing to attend, he explains: “I have always been a shy type of person, never been one to talk about stuff and then, you know as soon as I needed someone to talk to all of our friends shied away from us so, when Kym said we’ve got this session I thought yeah, I need to go for this.

We had each other and we had our parents, we were all there for each other but with such a sensitive topic it just made everyone cry and from the first session our counsellor Karen was someone who could listen to it all and I really felt that’s what I needed at that point.”

The importance of having a neutral person to listen, someone who can hold all your feelings without judgement, is something that we hear time and time again when our clients talk about how our service helped them.  Kym explains this really well saying: “Friends don’t know how to act, and you don’t want to constantly drag family or even each other down.  We needed that neutral person. You can’t really tell your friends and family what you are thinking because it was quite horrific at times whereas with Karen you could say anything.  I was very angry for a long, long time and I would come out every week feeling lighter because I had been able to say everything that I had been feeling that week and know there was no judgement – it was invaluable.”

Kym goes on to explain how support from Petals with things that seemed so small at the time made such a huge difference to their lives: “People kept asking us how we were, and it was driving us mad, because obviously, we weren’t ok, but we kept doing that British thing of yeah, we’re fine and it was making us so angry that we kept having to do that.

Karen helped us with how to manage that situation and with what to say to people which ended up being “we’re just putting one foot in front of the other” – little things like that made such a huge difference.  We feel so lucky that we got support from Petals because I genuinely don’t know where we would be without it, and we know that this service isn’t available nationwide.”

I say to them both that, we know that the death of a child can often increase the likelihood of relationships breaking down and with them being so young at the time it must have been a really difficult thing to come through intact.  Mark agrees, telling me that he often remembers something that Karen said to them in one of their early sessions: “something like this can either make or break a relationship – and I really don’t think we would be in the relationship that we are now if we hadn’t had Petals support.  I think we would have stayed together but would we have been able to go on and have more children and include Alfie in our lives, I really don’t know.”

Kym agrees, saying: “I think we would have stayed together but who knows, because having that safe space was so important – there were things that I wanted to say to Mark but couldn’t at home, I needed to be in the safe space of the counselling room and that’s where you can say it.  We needed that to have that open dialogue.”

The couple has gone on to have two more children, Barnaby, five, and Darcey, two.  Kym talks passionately about how Petals’ support got them through the anxiety of pregnancy after loss: “I really felt Karen was holding my hand through the whole thing.  It was just after the inquest that I found out I was pregnant, so it was invaluable to have that support again through all those extra emotions that were thrown on top – it was just a lot, you know.

You can’t underestimate how difficult a pregnancy after loss really is and what support you need to get through that, you know living every day of your pregnancy thinking is this going to be the day this baby dies.  There are just so many layers and areas of living after your baby has died that Petals’ support is just invaluable.  Why is it not just across the board that everyone gets this support?!”

The knowledge that not everyone who was in their situation would be getting the same support, added to the desire to mark Alfie’s life in some way, sparked a need in Kym and Mark to do something to help others.  Following the inquest into Alfie’s death, they worked with the hospital to change their procedures in the hope that their traumatic experience wouldn’t be replicated and then the couple started on their fundraising mission.

Over the last six years, Kym and Mark have raised thousands of pounds for Petals but Kym explains that it was about more than just raising money.  She says: “Fundraising really helped me get through, I needed a focus and that’s what it gave me.” She jokes: “I’m a bit of a busybody I suppose and I needed to keep busy but being able to see the value in it helped so much too.  We were thinking, you know, we can’t change our situation but potentially we can change it for someone else.”

From auctions to tea parties, Bear Grylls survival races to bake sales, Kym and Mark have dedicated huge amounts of their time to fundraising for Petals and their efforts played a big part in Petals beginning to expand.

When I ask Kym where her passion for supporting Petals comes from, she explains beautifully why Petals means so much to her: “I look back on that period of time and remember just feeling so dark and empty and like I had nothing to live for really – just having those sessions, they were a beacon of light.  It was like we were living in a dark room and our counselling sessions were a candle giving us light – we could hold on, knowing that another session was coming where we could say what we needed to say and just be who we are and let it all out and then you go out into the world feeling like you can face another day.”

I can see in Mark’s face that he feels the same and I think back to the start of our conversation when he was describing what it is like as a man thinking about going to counselling.  The significance it has had in his life is clear to see and so I ask what he would say to another man reticent to take that first step into counselling.  He responds passionately: “Just 100% do it.  What’s the worst that can happen? You’ve been to the worst place already and if counselling isn’t for you that’s fine too. But just go there knowing you will be met with so much love and kindness.  For me, it was a case of everyone asking how Kym was and no one ever asking me, and that’s where Petals was so nice to have as a service for us.  It’s not just about supporting the mother, fathers need it too.”

As we come to the end of our conversation, I say to them both that they should be so proud of everything they have achieved as a couple, of the family they are now.  Kym explains that it is all for Alfie: “When your baby dies, you are the one responsible for their legacy and this, all the fundraising, is his legacy.  A friend once said to me: “People are here for 80 years and don’t build the legacy that Alfie has” and for me, that’s an incredible and positive thing.”

I couldn’t agree more – to see Kym and Mark living a full life that brings Alfie with them at every step is an incredible thing.  What a legacy, indeed.