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Robynne's Story

18 October 2014



Blog post by Robynne Upton

On 30 October 2013 at 2:14am my little miracle, Ethan, was born. He weighed just 800g (1lb 120z) and was delivered via emergency C-section due to my severe pre-eclampsia. He also had Intrauterine Growth Restriction (IUGR), meaning his growth had slowed down while he was in the uterus.

After six minutes of his birth, he filled the room with a huge cry! His daddy and I both had tears rolling down our cheeks. He was taken straight to the neonatal unit and I was taken to the high dependency unit to be cared for. It was the next day when I was wheeled down to meet him for the very first time.

When he was two days old, they were getting him ready to be transferred to our local hospital. However, a last minute X-ray to check his long line was in place revealed a spontaneous perforation in his bowel. So it was decided he would stay in Nottingham and have emergency surgery straight away. It all happened so quickly, one minute he was getting ready to go closer to home, the next I’m signing a consent form for my critically ill son to go to surgery. He had surgery to form an Ileostomy (stoma), which would help him get rid of his waste into a little bag attached to his side.

A few days after that we were called into a family room by one of the doctors. We were told that Ethan had contracted severe sepsis; he was going into renal failure. The Doctor said he had 24 to 48 hours to pull himself through as they had done all they could. They gave him a blood transfusion. He looked so poorly, his poor belly was so swollen and purple and he looked like he was so weak and in so much pain.

Miraculously, he pulled through. He was taken off the ventilator, his stoma started working and he was passing urine. The next stage was to get him up to full feeds and then he could go to our local hospital. He was on expressed breast milk and got up to full feeds quite quickly, we were transferred three and half weeks after his birth.

We were on the neonatal unit in Coventry for just over a week before being put into the special care unit. He was moved from CPAP to high flow oxygen, and then just on nasal prongs and he’d sit at 0.1, just clinging onto the last little bit of oxygen. The only real trouble Ethan faced was his very high stoma losses, this was rectified by the dietician putting him on a medicated milk called pepti junior. I had trouble producing my milk and so this milk was the best for Ethan. His stoma losses calmed down and he piled on the weight!

He came off oxygen altogether and was put into an open top cot. Then the word ‘home’ started being mentioned. Then everything just happened so quickly! He was off all his monitors, on full bottle feeds and on 30 December I roomed in for the night with him. I was terrified, for the first eight weeks off his life I’d got used to the beeps and noises of his machines watching his oxygen saturation monitor, and now I was in a side room with my tiny baby in a cot in silence! But I soon got into the swing of things, although I only got about 30 minutes sleep as I spent most of it lying there staring at him.

On 31 December 2013 (New Year’s Eve), Ethan was allowed home, nine weeks after being born. He was on medicated milk and six different medicines, I was trained in how to change his stoma bags, give his medicines, and everything else. He weighed 4lb 7oz and he barely fitted in his car seat properly, he was that small!

Coming home he has had no real problems, he’s just gone from strength to strength. He had his stoma reversal in March and was only in hospital for four days.

We have been in hospital once after that with suspected meningitis but we were only there for two nights and he was all clear – it was more than likely a viral infection!

He is now nearly a year old, he’s cheeky, chubby and just a pure blessing! He weighs 15lb 130z and is doing everything a baby his age would. We have developmental appointments and physiotherapy appointments every few months both of which he is doing very well in!

He is a miracle and has taught me so much about myself as a mother. He is my true hero.

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