Sue's story

Sue's Story Hero

Sue and her husband were delighted whey they discovered she was pregnant with twins, but their joy was short lived when Sue went into labour at just 25 weeks

When we found out I was finally pregnant, it was one of the happiest days of our lives, as our dream had finally come true. It wasn't an easy journey over the years to get to this point and then to be told we would be expecting twins - it all seemed so surreal. Finally we were going to be a mummy and daddy!

My pregnancy was normal. I had awful morning sickness for the first 18 weeks but I loved every moment of it.

My last scan at 23 weeks showed twin one had low amniotic fluid, but they weren’t concerned, as I was fit and healthy. I was due to have a scan two weeks later, but on 22 December, I felt more tired and irritable than normal. I put this down to not sleeping well. At around 1.00pm I started to get what felt like period pain but thought nothing of it, so carried on as normal. The pain started to get worse, but it never entered our minds that it was labour pains, as I was only 25 weeks.

At around 5.00pm I called the hospital and we went straight over. What happened next was unimaginable - I was in labour and the twins were on their way. We were in complete shock and felt so frightened. There was no time for pain relief or the steroid injections to help mature the twin’s lungs.

Two machines were wheeled in and we were told they were incubators for our babies. It all happened so quickly. Our eldest was a difficult birth but our youngest arrived quickly after. We had two boys!

We didn't get to see them as they were both whisked straight off to their incubators and the team of doctors. The wait felt like forever, I just felt numb and scared.

My husband called over to one of the doctors. When he turned and looked at me I knew straight away. Our eldest, Cole, had passed away. He was just one hour old. He was perfect in every way and the short time he was in our arms left one big imprint in our hearts. We were filled with unconditional love and pride like we’d never felt before.

Our youngest, Taylor, was seriously ill and needed to be stabilised before being transferred to a specialist unit. I got to sit with him for a couple of hours during the early hours of the morning before he was transferred. He was perfect in every way, just like his brother. It's hard to describe how I felt. I suddenly had to deal with so many emotions: grief, anger, confusion, hope and fear.

They were both born weighing just 785 grams each (1lb 11oz). We had crash landed into a world we never knew existed, the neonatal world, and one in which we experienced some extreme highs and lows. Every day was an emotional rollercoaster, as we had to be strong for Taylor, yet try to deal with our grief for Cole. Words cannot even begin to describe how we felt.

We called the hospital every morning and evening, and made the 50 mile round trip to see him daily. It was so difficult leaving him at the end of the day.

From the moment we stepped foot inside the unit, every member of staff was amazing, they kept us informed of what was going on, allowed us to be involved in Taylor’s care routines and looked after us as well. We became experts in oxygen saturation levels, saw countless blood tests and transfusions and learnt about brain scans, chest and lung X-rays, and gravity feeding.

I soon learnt about the importance of breast milk to my little miracle, so I was strict with myself and expressed routinely day and night for my boy. I would often cry at the small amounts I produced or the pots I'd knock over because I was so tired, but I persisted and soon saw a good supply. By doing this I felt closer to him and that I was helping his chances by getting the important nutrients only a mum can give.

He became extremely poorly at two weeks old and they suspected NEC (inflammation of the bowel) as he had a distended abdomen. In week three, his kidneys stopped three times and his blood pressure was low. They treated him for this but the cause is still unknown. We soon learnt that Taylor had his own way and he was going to keep the doctors and nurses, and us, on our toes.

His abdomen didn't get any better, so he was transferred to another unit for further tests and monitoring. NEC was confirmed and at just five weeks old, weighing 2lb 2oz, he had surgery which saved his life. Slowly milk was introduced and he was transferred back to the previous unit, where he just needed to grow bigger and stronger.

Finally at 107 days old, weighing just 6lb 4oz, he was allowed home. We were ecstatic - finally our boy was coming home and we could be the mummy and daddy we'd always dreamt of.

Our journey didn't stop there. We spent six wonderful days at home with him before spending the next 21 days in and out of hospital. He had three more stays due to feed related reflux and the last stay due to a lung infection, which resulted in him being intubated again and a stay in PICU.

At exactly six months old, weighing 12lb 2oz, he had a further operation, which was a great success. Taylor is now 12 months old and is doing amazingly well. He still has some battles to fight with his physical development, but he is showing us what strength and determination is really all about.

Not a day goes by without thinking about Cole. There’s an intense feeling of loss and part of me will always be missing. I have good days and bad days and it's slowly starting to get easier. I am extremely lucky and grateful that we have Taylor and he helps keeps me strong.

It was just over a year ago now, but it still feels like yesterday. The mark the NICU journey has made on me will be with me forever.

If we could give you any words of advice it would be to let the nurses, doctors and consultants give you all the support you need. We know it's an exhausting and stressful time going through neonatal care and unless you've been through it, it's hard to really understand, but the nurses, doctors and consultants do. They put their lives on hold, miss their breaks and go home late, all to ensure your little miracle gets the care they need.

Let them work their medical magic and ask as many questions as you like - no question is a silly one. Also, take time out for yourself, even if it's going for a 10 minute walk. We know it's hard, but it’s important - there is no point in being exhausted the day your little miracle is allowed to come home.

If you have been affected by any of the issues mentioned in this post and would like support, you can view our online support pages.

If you would like to share your story with Bliss, email