Father’s Day 2025: Fighting for their lives
It was a normal Tuesday in August 2024. My wife Taz hadn't been feeling well and was suffering from cold-like symptoms. At this point, she was just shy of 31 weeks pregnant with our third child (we also had a 6-year-old and 3-year-old). As the day went on, Taz started feeling a little pain around the right side of her chest. We called 111 and the advice was to go to A&E to get her checked.
Where it all began
It was at A&E that it all began for me. Our other two children were on school holidays so we dropped them off with family and I stayed with my wife in A&E. Little did I realise at this point that this was about to become a very common occurrence over the six weeks that followed.
While we waited for what seemed like hours in the waiting room, Taz's condition deteriorated. She was up and down with fever symptoms, shaking, high temperatures and still had the pain in the right side of her body. She was seen by a doctor and transferred to a bed in a ward. She remained under observation for a night, was given some IV fluids and antibiotics and stabilised.
The next day, doctors discharged her but told her to visit the maternity ward to check our baby was doing okay before going home. Taz was hooked up to a CTG scanner and the baby's heart rate was checked. The results were inconclusive, and her heartbeat was very irregular, which caused concern. So again, she stayed in for another 24 hours under observation.
Once the IV fluid had drained, Taz’s temperature began spiking again and she had more feverish symptoms. This time with dizziness thrown in. Alarmingly she was deteriorating more quickly than before.
Seven words that changed everything
We must have had in excess of 15 doctors come and go in the next six to eight hours until we finally met a doctor called Eddie. I remember his name because he was so significant in this journey. He had been given information from other medical staff but very quickly said, ‘We need to investigate her for meningitis‘. This changed everything.
They quickly took Taz for a CT scan and MRI which indicated meningitis was present. Then discussions started about delivering our baby early while at the same time needing to do a lumber puncture on Taz to confirm whether the meningitis was the cause of all this. I find it virtually impossible, even now writing this, to describe my emotions at this point. My brain was working in overdrive, not just from this news, my worries around both Taz and our baby, but also concern around the ongoing care of my other two children who I'd left with extended family. On top of this, I hadn't slept for days – it was Friday night, and we'd been in hospital since Tuesday.
On Saturday morning we were sent to the ultrasound department to find out what was going on. The scan revealed a bright white, almost obvious line in the umbilical cord. Doctors reviewed this and felt that Taz's viral or bacterial infection was reaching our baby and it was imperative that she was delivered immediately.
“I find it virtually impossible to describe my emotions at this point. My brain was working in overdrive, not just from this news, my worries around both Taz and our baby, but also concern around the ongoing care of my other two children.”
Taz was rushed down to theatre, and I was sort of whisked along behind her. Looking back, I had no idea what was going on other than it all seemed very serious. There were groups of doctors and nurses escorting us. They took Taz into the theatre room and I was left outside and told to wait.
About seven or eight minutes later, I was told the doctors had commenced surgery and were doing the lumber puncture. They told me to get into scrubs, which they virtually threw at me, and to come into the room as our baby would be delivered via C section straight after the lumber puncture. When I went into the room, it felt so small – the number of people in there was overwhelming. Probably around 10-15 people in a room no bigger than a medium-sized garage.
I did as I was told. I was taken straight towards Taz. I walked around her bed and could see a lot of tools at the ready. A doctor who I now know as Doctor Shah (who was also amazing) was already deep into the operation and I vaguely saw a lot of red in the corner of my vision, which I only assume was Taz's blood where they'd cut her open. I tried not to look in case I become queasy. I knew my job was to remain strong for Taz. Despite being under the knife, she was still just about awake but in good spirits at this point, probably due to the drugs. I distinctly remember her saying ‘Can you do a tummy tuck while you’re there?’ to which Doctor Shah replied, ‘We charge extra for that’. Making light of a very worrying time made me smile for the first time in days.
“I knew my job was to remain strong for Taz... I was desperately trying to put on a brave face.”
A few short minutes later, I remember Dr Shah saying ‘Baby is out’ but hearing no noise. Having witnessed two births previously – one vaginal, one caesarean section – I felt a real sense of panic come across me. I didn't know what to think. My face probably told a story, but I was still desperately trying to put on a brave face for Taz.
A neonatal nurse, who I now know is called Karen, then took me over to see our beautiful baby girl. She was tiny. Like nothing I'd seen before. Born at exactly 31 weeks gestation. She’d been put into mobile incubator very quickly and wires were beginning to be attached to her. I don't really recall the following moments too well but what I do remember is leaving the theatre and walking behind the baby in the incubator, which was being wheeled down a long corridor, and feeling like I was in a really traumatic headspace. I find myself thinking about this moment even now quite a lot. I was obviously over the moon my baby girl had entered the world but overwhelmingly disturbed by the thought of both Taz and my baby potentially fighting for their lives – and there being absolutely nothing I could do about it. I was terrified.
Welcome to NICU
Moments later, I was introduced to the NICU. I remember thinking about how quiet it was in there. You always imagine a department full of babies to be noisy with lots of crying. But it wasn't. It was just so peaceful and had a real feel of calm.
Our gorgeous baby girl was then put on CPAP, something I'd never heard of until that moment. Now this acronym just rings alarm bells in my head. That earlier overwhelming feeling of worry was now really setting in hard. I've never felt more helpless as a dad or husband. There was nothing I could do but sit and try and take it all in. It was a very lonely place despite all the nurses around (who are by far the best nurses in the world) and my own baby girl lying in front of me. I couldn't do anything but sit and watch. I was scared to even touch her in case I passed something on. I was scared to hold her in case I hurt such a little being. Gradually this became easier, but it was a really tough time. All I did for a while was talk to her. Try and get her used to my voice as in this moment, she had nobody else. Taz was sent to an isolation ward where she stayed for the next 10 days.
Separation anxiety
Taz wasn't allowed to come to the NICU as she was considered highly contagious and it had been confirmed she had viral meningitis. Let that sink in. A baby’s mother cannot meet her baby! Imagine how that feels for everyone involved. I remember video-calling her so she could see her baby. To be honest, it was horrible. On my part because I just felt so guilty about being able to be next to our daughter when she's not allowed to do the same. But also, on her part because she couldn't be there. She was so desperate to meet her whilst she recovered and just couldn't. One thing I did which I’m really pleased I did, every time I was next to our daughter, I’d write down a diary entry with what the doctor had told me about her status. When Taz read the entries, it gave her a little hope and also allowed her to feel that bit closer to the whole thing even though she couldn’t be. I got a little bit of a breath of fresh air seeing her read them and feel part of it all.
During this time, I felt weird about our daughter being referred to as simply ‘baby’ and this was purely because we hadn't settled on a name together. On reflection, I think I was holding off because I wanted Taz to be with her when we named her, but as more and more days went by, I felt more uncomfortable with calling her baby. By around Day 7 or 8 of life, I had a conversation with Taz, and we decided to name her ‘Sofia Hope’ – Sofia being a name on our shortlist anyway. To this day, I still wonder if I put too much pressure on Taz to name her having not met her and I guess I still have a bit of guilt around this. Perhaps I shouldn't have rushed this? That said, the name suits her and I’m certain Taz is happy with it. We have talked about it since and in hindsight, would have liked to have done things differently but that’s it – hindsight.
Routine, routine, routine
Over the next 10 days, my routine became very standardised. I would be at home with our other children in the evening and overnight and then in the morning, drop them with family and friends, then go to the hospital, spend a couple of hours with Sofia, go grab lunch, then go up to the isolation ward, visit Taz, spend a couple of hours with her, then go home, shower up and be with our other children for the night. This was pretty much how it went until finally Taz was deemed fit enough and no longer contagious. She was allowed to finally meet her daughter! I cannot tell you how much I cried when she finally got to be with her. It was a very special moment. A memory that will live in my head forever.
Taz had worked so hard to get through her illness and even try and express breastmilk to provide the best stuff for Sofia while she was on the ward. A challenge which proved to be really tough for her. Her body was weak, her milk was in poor supply, and she couldn't even boost it by being near Sofia. I am pleased to say, she fought through the challenge and now Sofia is exclusively breast fed and all the issues we had before feel like a distant memory.
After this, Taz's recovery went well. I personally think the boost of seeing and being near Sofia gave her a purpose and a need to get better sooner. Every day from this point, she would spend most of her day down in the NICU getting to know her daughter. It was so refreshing for me. It felt natural and how it was supposed to be.
Rollercoaster of guilt
Over the whole six weeks in total, it was tough in many ways. It's really hard to describe the rollercoaster journey of emotions I went on, as I’m sure many dads do, through this process. I felt so much guilt through the process: just through things like not being able to do anything to help Taz in her time of need, watching Sofia lay there in her incubator not being able to do anything to give her strength and even my other children who I was basically palming off to everyone else during the process.
When my son went back to school in September, he struggled to get back into the learning headspace. I was upset when his teacher told us on parents evening that he wasn't performing like he had the previous year. I remember feeling like this was all my fault and perhaps if I'd managed things better, it wouldn't have been so chaotic. I took a lot from this. Both Taz and I worked hard afterwards to get him back on track, but the balance was unreal.
Something that was also a worry in the early stages were my work commitments. I work full time so to try and explain to them what was going on when in the early stages I didn’t really know myself, was difficult. Fortunately, I was supported and given time to be with my family. My message to anyone about this is, be honest with your employers. Describe exactly what’s happening. If they are worth their while, they will support you.
Growth – for all of us
As time has gone on, I've been able to reflect on my experience and learn from it. I can now happily say that both Sofia and Taz are doing amazingly well. Taz has made a full recovery, and Sofia is thriving at premature life. We are soon approaching her first birthday and it’s been a year in which we have grown and developed as a family. We've become so much stronger together and honestly feel like we can battle anything.
Sofia, although treated for meningitis, was never formally diagnosed with it thankfully. She went through the motions with NICU, having breathing issues as many premmies do and other hiccups along the way BUT, all in all, she developed well and I will always say, thanks to the staff at the NICU – particularly the nurses, she is here today and thriving at life. I can never do enough to repay them for everything they did.
From one dad to another…
I know my story is just my story, but I suffered quite a bit mentally and physically throughout this process. Despite this, NICU and the NHS are prepared for it. They have therapists, support staff and lots of useful information around the NICUs to get you through it. It's really easy to say to other dads just stay strong but the reality is, this will break you but you will rebuild stronger, and you will become a better person for it. You will learn about yourself in a way you never thought possible and your perspective on life will change.
From one dad to another: You are living an experience that will stay with you forever. You are a vital part of this journey. Know that you are doing your best and we're all proud of you.
Thanks to Jamie for sharing Sofia’s story.