Sara’s Story

September 27th, 2010 by Sara

I had my little boy back in 2006, who was born 6wks prem and by c-section as i had pre-eclampsia too, so was very poorly. I din’t get to see my baby till 3days after, just saw him on a polaroid photo the special care unit sent up for me. However as i was getting better, my baby developed NEC 5 days after he was born, swollen belly, blood in stools etc. Then we had to wait for a transfer to a hospital equipped to deal with my son, seemed to take forever. As they only have so many ambulances equipped with incubators which have life support etc. I was throwing up waiting, due to the shock i was in. Knowing i had only just met my baby and had never held him before! Especially when i also was so ill. They told me he urgently needed to be transfered as they suspected he may ned surgery. We eventually were told he would be sent to St Marys in Manchester, 20 mins drive away. I had to be transfered to the same hospital as still very poorly too.

We were then taken to a family room! (bad news room!) and told at 1am in the morning he had NEC and it had perferated and he had less than 1% of surviving! My whole family rushed up and we all went in 2 at a time, to say our goodbyes. we were told in the room to sign the consent form. we both couldnt breathe, talk or even stand up due to how emotional we both were. I couldnt even see the pen or paper when i had to sign, what i thought was my babys life away! The worst feelings ever.

He was then taken to theatre, our whole family were kindly put up in the family rooms, where we sat and waited and waited for hours. Although, i was still officially a very poorly patient, but at this time refused any treatment as i was loosing my baby! So they soon had to stop arguing with me. Hours past, then we heard people in the corridor.
He was being brought back to intensive care, we were told to wait in a family room where we were told they had operated and removed 3rd of his bowel which had died and he had stomas. To let the intestine try and recover and see if at some point this could be reversed.

I am missing out so many details, pain, emotions in between all of this. However i am sure you can imagine what you feel when your baby is so ill.
We were finally allowed to see him. He went through so many ups and downs, infections, blood transfussions, long lines etc. In between being in intensive care, then high dependancy. Back and too for months and months. The stomas were not working as they had hoped so they operated to reverse them and only hope for the best as this was his last chance. So many times, the operation was cancelled coz he was just too poorly. Months went by again, we lived in the family rooms when they were free and never left his bedside. He was then allowed to be taken off the wires for a 10min break for us to take him in the hospital pram to the canteen. Wow, that felt amazing. Even knowing that might be the only chance we ever get to take him anywhere, but an incubator.

He was then referred to another hospital, where he stayed a while. Few more operations, infections, long lines etc. Can remember one time, when i had to take him into theatre gowned up weighing less than 6lb and took him into a theatre rom ful of people. Where i was then asked to put him down and hold the gas mask over his face so he could still see me! This was one of the worst things i had to do and still gives me nitemares to date. Just watching him go under the gas to be knocked out in itself was hurrific, i was crying my eyes out and could barely even see him through my tears. He was in this hospital a little while. Then transfered again to another hospital where we remained for another few months and specialised in bowel problems etc. we were in an issolation room for months.

So far this had been 6 months of living with my baby in hospitals. I decorated his room and wanted to give him everything i could, always fearing the worst and he would never get out of hospital or even make it. I stayed strong and just hoped he would too. I new all the staff, cleaners,canteen staff, patients and other families. Who almost become part of your life, as nobody else could ever understand what you were possibly going through unless you were living it or been there. Which i would not wish on anyone. However it does happen and i am determined to try and research in to this more. Are there any research groups?

My litle boy eventually came out after almost a year and was back and too to hospital for years, doctors, dieticians. I had to order Special milk at my local chemist and feed every 3hours cause his bowels could not take more in one go. Used to walk out of the chemist with three carry bags full, including medicines and liquigen which was to bulk up the milk for him to try and gain weight.

He is now 4 and is my shining star who i never thought would make it. He has 6 scars which i want him to be proud of as they saved his life on so many occasions! He is allowed to drink normal milk and food now. He just has very bad bowels, which may never get better. But a small price to have to pay considering what he unbelivebly got through! We still go to hospital appointments and he was the dieticians star patient too. In all the years he had looked after anyone, he said my son was an exception to the rules. To go from the worst extreme to a healthy little boy now brings tears to his and all our eyes.

I am eternally grateful to all the hospitals and people who helped him survive and be there for me too. It was the hardest year of my life. But through all the heartache and pain he is still here today. I hope you dont mind me telling you my story, there are not that many people, infact none that i know who have experienced what we have. Other than some in the hospitals at the time. I just wanted you to know that there are a few that make it and i am so so sorry for your losses. But, the more people/hospitals that are aware of these symptoms and the more research that can be done, the better. I dont want anyone to go through what you or i have been through.

Thoughts are with you all

2 responses to “Sara’s Story”

  1. Sharon says:

    I’ve just been reading about your son and wondered if you had any advice for me. My premature daughter contracted NEC at 2weeks old 7 weeks ago. She wasn’t expected to survive surgery but she pulled through. The surgeon put in two stoma’s she has been left with 15 m of small bowel. He is planning to operate again in January, we are praying that she might have grown some more bowel as apparently 15cm isn’t enough to survive with. We live in nottingham.

  2. Sunni says:

    Hi. I came across your story and I had NEC when I was a baby, and my bowels perforated too. I was born full term which made my case even more interesting since NEC is mostly found in premature babies.. But I wanted to let you know and give you a little reassurance that he will be proud of his scars. 🙂 I am because and I have always been my entire life because I know without them I wouldn’t be here. Have a blessed day.

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