I am sorry if people feel this shouldn't be here as it is not controversial. I don't really post anywhere ekse and though I would put this where some people know me.

Today is Omphalocele Awareness day and I am trying to do my bit for the cause. In December, we were told that the baby we waited 5 years for and conceived through <a href="https://glowing.com/glow-fertility-program">ivf</a> was almost certainly "incompatible with life" following our 12 week scan. I cannot describe the devastation and terror of confronting more loss.

We were told that he has exomphalos (the name in the UK) that his internal organs (they were not sure what all at the time) were on the outside and told I could terminate the following day. We were so desperate for any shred of hope and had a lot of questions. It turned out that there WAS a chance. We were warned that in all likelihood he would have a chromosonal disorder (30-50% chance), probably Trisomy 13 or 18 and I would be unlikely to deliver, a 30% chance of a heart defect if he did live, a very high chance of underdeveloped lungs and that he would 100% certainly need extensive surgery to repair his tummy.

We left and I began to google. I found a wonderful group, Mothers of Omphalocele and was welcomed as a MOO. I saw all the stories of other mum's and they saved me. I started to believe when I saw the babies they call their warriors. I saw the beautiful babies who walked away from this with nothing worse than no belly button! I saw babies with issues, don't get me wrong but I dared to hope that my child could live.

I am 20 weeks on Tuesday and we still have a journey to get him here safely, but I am carrying a warrior. We lost his wee twin, I have had 6 major bleeds but my wee man hangs on. He does not have a trisomy and so far his heart is looking good. He has his bowel and part of his liver in his omphalocele, which is major, but not worst case scenario. I am still terrified but I feel him moving and I know that I need to be strong about this, because he is.

We have named him Lorcán. It is a traditional Irish name meaning wee fierce one. We need him to be!

Omphalocele awareness day is about raising awareness of the issue so that people know it is not a death sentence. Sometimes these wee warriors do not make it, yes they all have a difficult path but many are just your average kid.

I am proud to be part of a group of women as strong as the MOOs and the UK based group GEEPS and I hope I can live up to their bravery when it is my turn to face the the fear around delivery. I am proud of my son. I cannot wait to meet my warrior.

I really appreciate anyone having read this far. Today is the day for these special wee people who fight their way into the world. If you could send some positive thoughts or prayers or whatever you do to all the babies currently fighting and to all the parents whose wee warriors just couldn't win the fight. Thanks