‘It’s So Important To Reach Out For Support’ - Thomas And Joseph’s Story

We had no idea that Joseph would be born prematurely - I was coaching football when my wife went into early labour at 25 weeks 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 we were rushed to Queens Hospital for emergency surgery. tThen 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. The doctors told us that it was likely that he wouldn’t ever be able to walk or talk.

I Needed To Know The Facts To Process What Was Happening

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.

After one operation, Joseph was rushed for emergency surgery and there was a 50/50 chance of whether he’d be okay or not.

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 is a really normal little boy now.

Support From Bliss Has Been Invaluable

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 For Other Fathers And Families

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.

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.

Don’t Forget About Dads

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.

We’re So Lucky We Have Our Happy Ending

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.

Help And Support Is Available From Bliss For Those Affected By A Stay In Neonatal Care

The trained volunteers at Bliss are on hand to help you and are there to support families whose little ones need neonatal care, no matter the reason for their stay or how long they are there for.

Support can be given in person or remotely, via the Bliss email and virtual support services. Please get in touch at hello@bliss.org.uk for support and information via email or video call. More information is available here.