We’ve learned so much from him: he was so strong, how can we not be?

After 3 years trying for a baby, a difficult pregnancy, then 7 months in and out of hospital with our son, we never expected that we'd lose him. 

It took us a long time to fall pregnant. We had tried naturally then we were offered some tests which came back fine. We were then referred for fertility treatment and, luckily, it worked first time. 

You expect you’ll just have babies but it’s not that simple for everyone. When you get a negative test every month, you do start to question whether it will ever happen for you. 

Riaan's first days

Sharan did a test and woke me up around 4am one morning to say it was positive and, from that moment, everything changed. The Dad responsibilities had started. It was a combination of the happiest I’ve ever felt with wariness, but I was quietly confident. 

The pregnancy was quite difficult. We found that at the 5 month stage he was measuring small which meant weekly, sometimes daily, growth scans. Those last months were stressful. Covid had hit so Sharan would often go to hospital alone which was tough because, as a guy, I wanted to be there to provide reassurance. 

I was there when Riaan was born. He weighed just 4lb 2oz and, because he was so small, had to stay in hospital which due to Covid meant I didn’t see him or my wife for a week. 

The day after his birth they detected 2 holes in his heart. Sharan had to call and tell me and I kept saying we’d sort it but, when I came off the phone, I allowed myself to feel that fear. We had a very small baby potentially facing open heart surgery. We were so relieved that in the end the holes closed themselves in the first couple of months. 

At 3 or 4 days old he failed a hearing test, but bilateral hearing loss wasn’t actually confirmed until later. Again, Sharan had to call me and this was harder to take because, unlike his heart, it wasn’t repairable and would impact his life. Still, I reassured her that we would learn everything we needed to make sure he was fine. 

They came home on the Sunday. Finally after 3 years of trying and a difficult pregnancy, he was home and it was the best thing ever. He was such a happy baby, nothing took the smile off his face. 

Sharan held him at the hearing test and says Riaan just looked at her, a look that said, ‘Don’t worry, I’ve got this.’ He gave us confidence, we’ve learned so much from him, he was so strong, how can we not be? 

We’d bath him together but I always dried him, combed his hair into a nice side parting. He was such a happy chilled out baby, you’d never know there was anything wrong with him. 

What happened next

When hearing loss was confirmed around 2 months, it dawned on me that every night when we put him to bed in a dark room, he couldn’t see or hear anything. Was he scared?  

That really got to me, babies look to sounds from their parents for comfort and he didn’t get that which makes me feel so guilty. From that point I’d always put my hand on his chest until he fell asleep, I wish I’d done that before. 

He had hearing aids from around 3 months and we had to use tape to keep them in because he was so small but it definitely made a difference. We were also learning baby sign language and starting to look at nurseries that were right for his needs. 

Riaan struggled to put on weight so was fitted with a nasogentric (NG) feeding tube through his nose, into his stomach, which sometimes made him sick. One night after he’d gone to sleep I noticed his head move on the baby monitor and went upstairs to clean him up, but when I got there he was foaming at the mouth and unresponsive.  

He started turning blue so we called 999 and they talked Sharan through CPR while I stood in the window waiting for the ambulance to arrive - which felt like forever but was only maybe 10 minutes. 

Another 10 minutes to get to hospital felt like the longest drive and when we got there, 3 doctors were waiting outside and the corridor was lined with more people. Even then I never thought we’d lose him that night. 

He looked so small, connected to loads of tubes and monitors, and the lady looking at the heart monitor every 15 seconds kept saying, ‘No pulse’. I remember her words, her voice, I replay it over and over. 

Then they told us that, even if they brought him back, he wouldn’t be the same. One-by-one people left the room until there were just 2 nurses and us. They cleared the machines, wrapped him in a blanket and we spent some time with him. 

Navigating grief

I’m good at not showing how I feel, usually put a positive spin on things and friends come to me for help. I’m not used to being the one needing help but losing Riaan completely broke me. I still don’t show the full extent of what it has done to me but I’m more open now. It’s so unhealthy to bottle things up, I wanted to be strong for Sharan but he’s my baby too and I needed support. It’s just not always easy for Dads to find support or ask for help. 

I didn’t sleep because my head would spin, my thoughts would come out, and when I did fall asleep I didn’t want to wake up to the realisation. I’d have nightmares, reliving the night we lost him. Guys need to be told it’s safe to open up, it’s not weakness to say, ‘I’m hurting, I need help’.

As a society we need to look at the language we use around loss, especially baby loss. People would tell me to be strong for Sharan which felt like telling me I couldn’t grieve.

And the things people say, ‘Everything happens for a reason,’ or ‘He’s in a better place’. If there’s a better place for a child than with his parents, I’d love to hear about it. 

It's time to talk

People don’t know how to approach baby loss. They think mentioning him will remind you, as if any parent who has lost a baby doesn’t spend every second thinking about their child. I’d talk about him all the time, when someone says his name it means everything because it means he’s not forgotten. He was only here for a short time physically but he’s still my son. 

And having another child doesn’t replace the one you lost. We had a miscarriage in February but that baby would have been Riaan’s sibling, not his replacement. 

We’ve raised £30,000 for hospitals and charities caring for sick babies and supporting parents through our fundraising project, Riaan Remembers. I also talk about loss from a Dad’s perspective on social media and found there are so few guys doing that and it needs to change.  

I’ve had so many Dads reaching out to say thank you for expressing what they felt but couldn’t say and they need to know it’s safe for them to open up. 

Raj is taking part in our #InThisWithYou campaign launching our new content hub for Dads and partners. Find out more here.