‘I wish I'd known it's okay to admit you are struggling as a dad’ - Tony’s story

When my partner Nikki and I went through IVF treatment, we were sure it was going to be one of the most testing times of our lives. Little did we know that just months later that experience would seem like a minor tremor compared to what was about to hit us.

With doctors confirming our treatment had yielded twins, we were elated. From facing the prospect of never having children to having two at once – it was perfect.

All that joy was blown away in one fell swoop when Nikki’s waters broke at 22 weeks. Rushed to hospital, doctors told us that the chances of the twins arriving within the next 72 hours were very high. In short, we were going to lose our babies.

Our world was torn apart. We were told that we would need to reach 24 weeks to stand any chance of survival. At that time it seemed so far away but miraculously Nikki held on, sitting in her hospital room for almost six weeks until Isabelle and Jack arrived in dramatic fashion.

Having gone to the toilet, Nikki found an umbilical chord and was immediately rushed to theatre and a c-section was performed.

Minutes beforehand, I had spoken to Nikki on the phone before jumping into the shower. By the time I was finished I had five missed calls before taking the sixth.

“I need you to remain calm but I need you to get here as soon as possible, Nikki has delivered the babies,” said the voice on the end of the phone. Complete panic erupted and I made the 30 minute journey to the hospital.

Having been reunited with Nikki, I waited over an hour before I was told I could see Jack. He had started life well but Isabelle was critically ill and being worked on. I had to wait to see her.

Upon opening the double doors of the neonatal unit I was overcome with fear. It was a calm scene but there were several incubators. Who was my son? Who was my daughter? This is not the way life as a parent should start.

Jack had settled on the ventilator and was being cared for by a nurse, with doctors inserting feeding lines into his belly button. Isabelle was nowhere to be seen.

My mind was everywhere. I felt guilty for leaving Nikki. Guilty I couldn’t recognise my own son. Guilty I hadn’t even seen my daughter. I wanted to help everyone but I was absolutely powerless.

I eventually got to see Isabelle and didn’t need to be a doctor to know she was critically ill. A large team had crowded around her and I vividly remember the words “It’s touch and go” being said to me.

A nurse told me to prepare for the twins being here until at least their due date. That was 12 weeks away. I had just sat and watched Nikki struggle for six weeks and I had been troubled by every minute of it. Now I had to wait around three months to take my children home – if they survived. I was struggling to see how I would cope with the next hour, never mind three months.

The days passed and thankfully Jack remained stable and Isabelle showed signs of improvement and by medical miracle, she came off the ventilator and oscillator at just five days old.

Sadly, during that period Isabelle suffered a brain bleed. We were sat down calmly by the consultant when the news was broken to us and the tone in her voice told us this was serious. It didn’t hit home until several days later just how serious.

Another consultant sensed we didn’t understand the issue and sat us down again, this time drawing a simple diagram of the brain and how the bleed was affecting it. The moment the conversation ended I asked Nikki if we could go back to the hotel we were staying at. I felt broken. I’d just been told my daughter may never walk. Even if she did overcome the odds, it would be up to two years before we could rule out further complications. It was yet another hammer blow.

That night in the hotel I lost total control of my emotions, crying like I never have before. I wailed with every horrific emotion I can think of. For the whole first week I had plodded on, determined to be strong for Nikki and the twins and I thought I was coping, but I wasn’t.

As the weeks passed I struggled to hold it together on numerous occasions but we felt there was progress and clung on to the hope.

Without realising, I developed a few coping strategies. I became obsessed with stats, constantly checking the charts to reassure myself, even though I didn’t understand them properly! I also had a daily ritual of listening to a motivational speech from a film called ‘Any Given Sunday’. Every day I would listen to it in the shower to get me going for whatever lay ahead. I’d also developed a level of OCD. I started tapping items a certain amount of times, partially convincing myself that would help with the twins’ outcome. To this day, that still lingers although thankfully not to the same levels it did then.

After eight weeks Jack was discharged and after 11 Isabelle joined us. There was of course excitement but in reality, a deep sense of fear buzzed in the background. Two babies that were seriously sick just weeks before were home with no monitors, no doctors and no other experts. It was now down to us and we were terrified.

I was determined to make everything as ‘normal’ as possible. I went back to work and Nikki was alone with two babies. In hindsight it was incredibly selfish of me as Nikki needed the support at a time when she was being tormented mentally. Thankfully, the weeks passed and Nikki seemed in a better place. The strength she showed to do that was incredible and I am still to this day in awe of her.

All of this was now over two years ago and as a family we have defied the odds. Both Isabelle and Jack have no major lasting effects of their prematurity and we are loving family life as parents.

When I look back at our darkest days I am convinced we got through it by being open with our feelings. For me, it was Nikki that I needed to be open with but for someone else that could be a parent, friend or even a complete stranger. Whoever it is, make sure you let those emotions go and talk it through.

Struggling is not a weakness. Remember, this is one of the most traumatic times of your life and acting normal really isn’t an option. If you think you are fine, I am going to say you are almost definitely lying to yourself.

As a dad I initially felt it was my job to be strong and show no emotion. To hold the ship together so that Nikki could function as well as possible and hope the twins could keep making progress.

After my breakdown I realised it was a much better option to open up. As men, we think it is a weakness to drop the macho stance but it is in fact the very opposite. It takes a lot of strength to admit you are struggling as a man and when you drop that guard, you should give yourself a very big pat on the back because that is the bravest and best thing you can do in that situation for everyone. You start to ask more appropriate questions to doctors, feel more aware of the situation and strengthen that ‘teammate’ bond with your partner.

Going forward, there is no doubt the experience has left life-long scars. Often when we are alone we will say out of the blue: “Remember when…” and reel off a memory from our time on the unit. Sometimes there are smiles when we do this and other times there are tears.

Having a baby in neonatal care is extremely scary and it will hit your mental state – regardless of whether your baby is there for one day or six months.

Take time to consider your feelings and act honestly to address them. The stronger you can make yourself mentally, the more equipped you are going to be to get through what is undoubtedly a heavyweight battle.

Did you find this story helpful? Listen to Tony talk more about his experience in our podcast – NICU, SCBU and you. You can also find more information and support on this page, including how you might be feeling, what support you can find and how to support someone else.