N.E.C premature baby...anyone else been through the same?

[chell2013x]

hi im new to this site...my little boy was born at 26 wks on dec 3rd 2011...weighing 2lb 14oz...he was doing so well until about day 10 he developed N.E.C...a very serious bowel condition...he had surgery for it but became too dependant on his ventilator...he sadly passed away on Jan 10th 2012 aged 39 days...i was just wondering if anyone else had experiences with this disease as noone really told me much about it i had to google to find out what it was...all i knew was that it caused Olivers bowel to start to deteriorate and he needed surgery...i feel lost :( x thanks everyone x

Hi chell, I couldn't read and not reply. I am so sorry for the loss of your son. I can understand your need to find some answers.

I can only tell you of my experience but like yourself, I learned more from the internet than the doctors. My youngest daughter was born at 25 weeks and had lots of gut problems. At one stage we were told she had probably developed NEC and had a perforation which would require surgery. It turned out to be a shadow on the xray. She had other problems which led to ecoli sepsis but we never got an official diagnosis of NEC even though she was forever on antibiotics.

I don't know what to say to you to try and help. Is there a chance you could go back to the NICU and speak withthe consultant? It seems like things weren't explained or more likely, you weren't in a position to take it in (completely understandable). Are there any support groups local to you or maybe bereavement counseling would help? I am a big advocate of Bliss, they have a helpline too - you may have seen their leaflets dotted around the unit. www.bliss.org.uk
A friend of mine received counseling through them a year after the birth of her son because she reached the point that she wasn't coping.

I hope you are able to find some peace. Keep posting here if it helps x

Hi chell.

So sorry for your loss. I hope u are able to find some peace at some point. I agree with obotheration in that it might help to talk to someone. I saw a counsellor from bliss and she was fantastic. It really helped me.

I had 10 week premature twins and did not suffer a loss. Thankfully they both survived. We were in hospital for 55 days and all the dr's were petrified of NEC and how serious it could be. My smaller twin was only 800g and they were at pains to tell us that his blood flow whilst in the placenta was reversed and this put him more at risk. To be honest i didnt really understand half of what they said but the sheer mention of NEC freaked me as they were so concerned about it. Could u go bak and speak to the ward staff either dr or nurse as they may be able to help. They are the experts.

Take care

Are u ok chell? U haven't posted again x