“I wish that I had reached out for help at the time” – Thomas’ Story

Tom 1

Thomas shares his experience as a young parent with a baby born at 25 weeks and four days. Thomas had to navigate working while his baby was in a NICU miles away from his home and wished that he'd had more support at the time.

My son Joseph was born on 23 August 2018, at 25 weeks and four days. I was 24 years old at the time and my wife Katie was 22. Joseph was 101 days early and spent 106 days in the hospital, and since then has had various appointments and operations.

We had no idea that Joseph would be born prematurely - I was coaching football when my wife went into early labour and was taken to Lincoln Hospital.

When Joseph was born he weighed just two pounds, he was put into a Tesco fresh food bag to keep him warm and then took him to the NICU. We spent five or six hours waiting until Joseph stabilised and got moved to Nottingham City Hospital on the same day.

I only realised how tiny he truly was when the staff asked me to change his bedding and so I picked him up – he was smaller than both of my hands.

We were in Nottingham City Hospital for three days and Joseph was put on a ventilator, but on day three they spotted some air near his bowel and we were rushed to Queens Hospital for emergency surgery. The bowel had spontaneously perforated and was quite a rare case – one of seven in the last 25 years. A stoma formed the day after the surgery and at first, it was working well but then he got an infection; his weight went down to 1.7 pounds.

At this point, I was on paternity leave and off work for two weeks. My wife was able to stay at the hospital with Joseph which was great. Joseph stabilised, but when he was three weeks old, loads of issues cropped up. He had two holes in his heart with three valves that weren’t quite right, a Patent Ductus Arteriosus (PDA), three grade four ventricular haemorrhages, brain bleeds, Chronic Lung Disease and various other infections. The doctors told us that it was likely that he wouldn’t ever be able to walk or talk.

Tom 2

The hardest part happened in week three. My wife had retained her placenta and had collapsed. She was rushed to a different hospital in Lincoln and had lost three litres of blood. As I rushed to the hospital I had a call from Nottingham saying that Joseph had acute kidney failure, and that ‘if he made it through the night he’ll be fine, but it’ll be a really long night.’ I had told the doctors that I didn’t want anything to be sugar-coated, I needed the facts so I could process what was happening.

I remember being at the roundabout where turning left would have taken me to Lincoln and right to Nottingham – I drove round it about seven times trying to figure out who I should go to.

I got to Lincoln to be with Katie and waited for her mum to arrive for her procedure to start before heading to Nottingham as quickly as I could. The next morning we found out that Joseph had survived the night. I was so happy and relieved but also felt awful for the other babies in the same one to one bay who hadn’t survived that night.

Katie had four days in the hospital and was able to go back to be with Joseph, but by this point, I was back at work. I travelled to the hospital to see them in the morning, go to work and then go back in the evening before going home to look after my dogs. I was driving 200 miles a day for five days a week and spending around £70 on fuel a day – financially, it was the most expensive time of our lives. I couldn’t have done it without support from family members.

We were transferred back to Lincoln briefly so Joseph would be closer to home for blood transfusions, but then they planned to reverse his stoma before he was discharged from NICU so we went back to Nottingham. For four days after his reversal, he wasn’t quite right and just kept crying and crying. When Katie changed his nappy, there was blood. He was rushed for emergency surgery because the re-formed bowel had broken down and was poisoning him from the inside – there was a 50/50 chance of whether he’d be okay or not.

Tom 3

Fortunately, despite it being a big operation he was okay and came home a week after his due date with a stoma. The stoma was reversed again after his 1st birthday – despite having a big part of his bowel removed, he was a really normal little boy now.

Bliss has been so helpful. We have used their letter of support pack to appeal for his school place to be pushed back - the support and information about school placements were sparse so Bliss’ advice was really useful.

My advice would be to speak to people in the hospital or parents who have been through it. I was very insular at the time and tried to be strong for my family, but later down the line I completely burnt out and picked up every bug around. It’s good to have hope and see stories with happy endings – that would have been really helpful at the time.

It’s so important to reach out for support – I really wish that I had reached out to Bliss after I had seen the leaflets on the unit. The NICU experience is so unique, you don’t understand it unless you’ve been there, so connecting with other parents is so important. We still have really good friends who we met on the unit.

Tom 4

My biggest regret was that I wasn’t there more for Joseph and felt that I missed so much, but I couldn’t afford it. Having neonatal leave and pay is so important. I also feel that Dads get forgotten about – maybe it’s because we have a macho culture and don’t want to speak about it. I would have loved for someone to check-in and ask, ‘how are you?’ because I didn’t want to put my emotions onto Katie – I felt so helpless because everything was out of my control.

Joseph turned three last August and we were discharged officially from the neonatologist just a couple of weeks ago. He is a smart, resilient, unique and special kid. He’s starting to recognise little things on his body like the scar on his tummy, which he now calls his ‘tummy smile.’ He’s made it a really positive thing which is really lovely for us – we’re so lucky that we had our happy ending.

If you're a dad or partner and would like to share your neonatal story, please get in touch with media@bliss.org.uk!