My twin grandaughters were born 13 weeks early on the 8/3/2011 and weighed 1lb 11oz each. They were doing so well. But were seperated to different hospitals in Yorkshire.

On day 16 Maddie the eldest twin got NEC. We were told not to read anything about this disease on the internet but obviously that night we did, and we were still quite hopeful that at worse she may have to be operated on.

The next morning on day 17, her parents went in to see her and were told the devastating news that there was nothing they could do.

We christened her that afternoon and she died later that day.

Maisie her other twin at another hospital in Wakefield is now over 2 months old and weighs 2lb 14oz and has been on formula milk for 1 week (we know this is a factor in Maddies death) and was doing fantastic until yesterday when she also diagnosed with NEC.
We are yet again devastated and they only hope we have is that they caught the disease earlier this time and the antibiotics work. The only hope we had to help us get through losing Maddie was the fact that her twin sister was doing so well and now she could also be taken from us.

My heart goes out to you…how does anyone get through this?

We were then 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 oth were. I couldnt even se 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. 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 thhis 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.

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 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.

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 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 ben through.

Thoughts are with you
Sara
xxx

I am so very sorry for your lossess. I can’t imagine this trajedy happening not once but twice. I really don’t know what to say. Your losses are so very fresh and raw at this time. What you are going through cannot be described. In some small way I can relate to your story as we lost our little Patrick at 19 days old in 2007. It was the worst experience in our lives. I have to say that as time goes by the black cloud does lift little by little. Every day be kind to yourselves any way you can. Be around loving people.

Christine