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
Sara
xxx

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Our son, Lincoln was born at 25 weeks and 1 day on April 5, 2009. On day 11 he developed NEC. The bowel had perforated and emergency surgery was performed. The surgeons were optimistic that the amount of small intestines remaining would maybe someday allow him to be fed orally. We were sooo relieved.. then a brain ultrasound showed a massive brain bleed/ivh likely caused by the surgery. We were devestated.. it was a grade 2 on the left and grade 4 on the right.. we were told he had a 66% chance of having a severe disability.. likely cerebral palsy etc.. it felt like our world ended that day. He continued on and began to improve.. luckily no seizures and eventually the bleed has resolved without the need for a shunt.. thank God! The unimaginable then happened.. he got NEC AGAIN!!!!!!!!! They delayed surgery until a barium study showed strictures/blockage/fistulas in his intestines and they operated again. This time he was left with less than 25cm of intestine and they removed the ileocecal valve. He is now left to live with extreme short bowel syndrome and is indefinitely hospitalized.. they said it could be years before he could come home. He is 100% tpn dependent but does receive tiny amounts of pregestimil through his g-tube. He was up to 5cc/hour until last week.. his little body just can’t tolerate feeds.. they dropped it down to 2cc/hour and that’s where we are at now. On a good note he seems to be perfect in every other way… he is hitting his milestones and hasn’t shown any signs of major disability yet.. he is a joy to be around and absolutely gorgeous!! He is off all oxygen for over a month! They said he may be a candidate for transplant but since his liver is not severely damaged yet from the tpn they will keep watching and waiting in the hopes that his intestines will grow and that he can someday have his tpn amount lowered.

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I gave birth to a girl at 28 wks. on July 6, 2009. She tolerated the milk I pumped until she was 2 1/2 wks. When she was taken for surgery, doctors told me there was nothing they could do. I am encouraging other moms to help bring awareness to the deadly infection(nec). I hope and pray that doctors will start to take x-rays of the stomach of premature babies if they are or aren’t displaying symptoms of nec. Maybe this can help them see if something is going on internaly before it is too late.

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I developed pre-eclampsia while I was pregnant and had been in and out of the emergency room for about 4 weeks when my doctors finally decided to deliver Kendal. Kendal was born August 14, 2009.She was so alert when she was born and was only required to be on oxygen for about an hour. She was born at 33 weeks, and we were told she was just a little small but she was doing great. The hospital doctors went from feeding her 10 to 35 cc’s within 3 days because they thought she could handle it. I was released from the hospital August 18th but I did not leave the hospital until 1:00 am the next day because I did not want to leave her. The next morning, I went to the hospital at about 8:00 and Kendal was not herself. She was pale and was not moving at all. The Dr finally came and explained she was very sick, she had to be transferred to a special hospital. She had to have surgery within 1 hour after being transported and they explained she had a condition called NEC. I live in fear everyday because I do not know how much her little body can take. I never thought anything like this would happen in my life and it has been very scary. Kendal has now had NEC for 9 days and the Dr’s seem to have the infection under control. Everyday is a blessing with her. Just reading all of your stories has been an inspiration to me and I want to thank you all for sharing your stories.

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Hi all, I can’t believe how common this so called rare disease is.

I had my twin boys on the 26th Oct 04 born at 25wks Thomas weighed 1lb 9oz and Matthew weighed 1lb 11oz sadly we lost matthew at 2 days old due to his prematurity he was just to small. Thomas seemed to do well that is until the 8th of Dec he was unwell not tolerating feeds distended tummy (he was in the same nicu bed where we lost Matthew) gradually over the next few days he went downhill his kidneys went into failure and we were told to prepare for the worst. He was transferred out to a specialist unit we followed and when we got there a dr came to see us and told us the chances of survival were very low.The next day when i went to see Thomas he looked awful ill never forget that day he was grey and had 2 cannulas in his head i thought id lost him then.Well they kept him on antibiotics and after 3wks decided that the only way forward was to operate at last!! after the op he perked up and after 3wks we were sent back to our local hospital but less than a month later he was transferred again,he had developed NEC AGAIN!!! This time was not so bad and after a month we were sent back and 6wks later i bought Thomas home aged 6mths He had actually had NEC 4 times but my little fighter never gave up thankfully. Hes now a beautiful 4yr old with problems feeding-due to not feeding because of the NEC-and possible cerebral palsy -due to a bleed the night we lost Matthew- but i cant thank the hospital enough for saving my little boy I didnt realise just how bad NEC was until after and i read about what a horrible infection this is and how lucky we had been for Thomas to survive 4 bouts of it I think more awareness should be made about NEC as its such a nasty thing to happen and so quick.

Thanks for reading our story

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