After my daughter was stillborn, I made her a promise to help others

After Ben’s daughter, Kallipateira, died at 38 weeks, he found that there was not enough support available for bereaved dads, so he decided to set up a group where fathers like him could meet up and talk. He and his partner, Gaynor, are determined to raise awareness and help fund more research into stillbirth, which is why they have set up a charity in their daughter’s name. This is Ben’s story.
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Things aren’t any easier 3 years on

When we found out Kallipateira had died, many people said that things would get better with time, and that time heals. It doesn't. You simply learn to adapt to each day that comes your way.

It is now getting closer to Kallipateira's 3rd birthday, and I feel no different now than I did when we were told the devasting news that she had died inside her mum at 38 weeks of pregnancy. What will always anger me is that her death was preventable, as are many other stillbirths. Kallipateira should be here in person, but she is not – I would do anything to be able to see her again.  

Society has this expectation that dads must be strong and be there for the mum. But who is there for us dads? 

Support often drops off after the first few weeks

After finding out that Kallipateira had died, we went home for 2 days. My partner, Gaynor, carried our baby girl inside before returning to the maternity ward to give birth naturally, where we could hear the sound of other babies crying. 

In the days and weeks that followed, we received 150 sympathy cards through the letterbox. In every single card they stated the same – if you need us, we are here. Yet 3 years down the line, the support we were offered seems to have tailed off. 

In the weeks after we became a prisoner in our own home. We could not go out much, as seeing other families with babies destroyed us. I kept thinking, what had we done to deserve this? When we did leave the house, neighbours would go back inside if they saw us coming out.  We even saw people cross the street to avoid us.

The only support we had was a bereavement midwife who came to visit us every other week and we could contact at any time.  

Our families were there if we needed them, but we just wanted to be left alone. You soon learn who are your true friends when your baby dies.  I can now count them on one hand. It takes a lot to be a true friend.

You should never tell a bereaved parent how to grieve

My advice to anyone who knows someone whose baby has died, at any stage, is this: do not tell them how they should be feeling or how they should grieve. Every single person feels differently. You do not know how the person feels: only they do. 
 
As the dad, I was treated very differently to how Gaynor was as the mum, and I find that this is still the case. Family and friends can be there for you, but it’s difficult for them to know or understand what you are going through. The best support I had when Kallipateira died was Gaynor. And the best support Gaynor had was from me.  

At the hospital, you are given leaflets and advised of local support meetings through different charities. We decided to get through our pain alone – but, along our journey, we started to meet other parents who had experienced baby death. 

You may notice I do not use the word ‘loss’ for Kallipateira. My baby girl died. I lost nothing but gained a much-loved precious daughter who is the love of my life. 

It would have been so easy to go downhill after our daughter's death, but I made Kallipateira a promise that I would help others through her name and help to save other babies’ lives. 

I realised that there wasn’t much support available for dads 

Within weeks of her death, I realised the support out there for dads is very limited. If I’d been able to meet up with a couple of other dads who could have understood what I’d been through, I think it would have been a massive help. 

Having experienced a lack of support myself, I decided to set up my own monthly meet-up for local dads who have experienced the death of a baby.  This was set in a friendly, informal environment, where dads would be welcomed with open arms by those who understand what they’re going through. This would be laid-back and relaxed space, where we could all talk about our babies and life in general. We could be there for each other. During the lockdowns I had to take this online, and dads were joining our meet-up from all around the UK and overseas.  

My advice to anyone who has experienced baby death is to simply do it your way – there is no right or wrong. To any dads, please let your tears flow and keep talking to people. You do not need to be strong. If you need to talk, I am here for you. To anyone else who needs support and guidance, please remember that you can reach out to Tommy’s.

We self-referred to the Tommy’s Rainbow Clinic

In May 2019, we had a miscarriage at 9 weeks. Neither of us were in the right frame of mind for another pregnancy and it was really hard, even though we’d spoken about having a second baby when we were pregnant with Kallipateria.

When we were ready to discuss the possibility of giving Kallipateira a brother or sister, we self-referred to Tommy's in Manchester – and in May 2020, we had our rainbow baby Apollon thanks to love and specialist care from Prof Alex Heazell and his team. Kallipateira had an issue with the placenta called chronic histiocytic intervillositis (CHI), a rare condition where the mother’s immune system does not accept the placenta in the womb. Based on research done by the Manchester team, we were given specialist treatment to care for the placenta during the pregnancy. 

After regular appointments with the world's best in Prof Heazell – as well as extra care from the Velocity team to treat potential gestational diabetes – we are the proud parents of our miracle baby boy, Apollon, who is now 15 months old. His name in Greek means god of the rainbow, sun and light, music and medicine. His middle name is Alexandros, in honour of Prof Alexander Heazell; Alexandros means Alexander, and in Greek this is defender of men.

We set up the Kallipateira Moorhouse Foundation to support the Manchester team

Professor Heazell means the world to us, which is why and the team at the Manchester research centre and Rainbow Clinic is the main beneficiary of our daughter's charity, The Kallipateira Moorhouse Foundation. 

On 14 August 2021, I took on my biggest and most dangerous extreme challenge walk yet on the Greek island of Rhodes in honour of Kallipateira, to raise funds for Prof Heazell’s research and to help save babies’ lives. I set myself a target of £20,000 for the Rhodes Extreme Challenge Walk. I’ve raised £5,500 so far, so I still have a way to go. 

The challenge was beyond extreme. I finished seeing double at times in the last 30 miles, suffering badly from sleep deprivation, exhaustion and terrible blisters. Nonetheless, I managed to walk around the full 150-mile perimeter of the island, nonstop and with no sleep, in a Greek heatwave of temperatures above 40 degrees. I completed the challenge in just 42 hours, making history in Rhodes as the only person to have done this.

Even though I am still recovering from the Rhodes Walk, I recently completed another walking challenge. To mark Baby Loss Awareness Week and raise more funds in Kallipateira’s name, I walked Trooper Lane in Halifax 50 times in a row. Trooper Lane is the toughest cobbled climb in Yorkshire, and maybe even the whole of England, so it certainly wasn’t easy – but every step I made was for Kallipateira. 

Reflecting on Baby Loss Awareness Week

People say baby death is a taboo subject but, in my opinion, it’s only a taboo subject for most who have not experienced it themselves. Most parents who have I met who have experienced the death of a baby want to speak about their children and what happened. They want their children to be remembered and acknowledged by people – but, sadly, this doesn't always happen. 

Baby Loss Awareness Week is vital for parents, so that their children can be acknowledged, but it is also a time to remind people that this does happen in the world. It makes me so sad to think of how many of the babies we remember during the week should be here in person – and this is why we need to do more research, which can then be incorporated into clinical care across the UK.

Baby Loss Awareness Week is more than just pink and blue lights. It is also about speaking out and saving babies’ lives – something which I am committed to doing through Kallipateira.

You can still donate to Ben for his Rhodes Extreme Challenge Walk here: www.justgiving.com/rhodes2021