Emma's experience


I was born in August  at 09.48. I was taken away from my Mammy and Daddy as soon as I was born because I had what they call Exomphalos, this was first detected on the first scan at 12 weeks at Port Talbot Hospital, from then on every thing was transferred to Cardiff (U.H.W).

My Mammy was offered an amnio test at 15 weeks to see if there were any abnormal genes in my blood as this is sometimes linked to Exomphalos, luckily there weren’t any, I was continually scanned every 2 to 4 weeks for The rest of my Mammy’s pregnancy which was a bit of a strain on them both mentally and financially as we had to travel to Cardiff from Port Talbot every time we had an appointment.

It was a rough couple of months for them both as nearly every time we visited the hospital there was something else for them to worry about, if it wasn’t my chest cavity not growing properly, my amniotic fluid was up and down all the time, sometimes it would rise to 15cms, and sometimes it dropped as low as 5cms, because of this I was told that I would probably arrive early.

Well the time was getting closer and all the way through the pregnancy my Mammy was told that she would give birth naturally, but 3 ½ weeks before my due date they were told that it was going to be an elected caesarean and the date was the 12th of August. The day before we had to go to Cardiff for a pre op examination, by this time my Ddaddy was very worried, he always wanted a little girl and for something to go wrong at this late stage did not bear thinking about. The following day it was my turn my Mammy chose to have a spinal as she wanted to be awake through the whole ordeal, my Daddy was also there trying to comfort her (I think he was more nervous than my Mammy).

The whole operation took about 40 minutes from start to finish and while they were stitching my Mammy back up I was in another room being cleaned up and where was my Daddy when all this was going on, standing right beside me filming it all. This all took about 5 or 10 minutes and then they took me away so as I could be assessed

A couple of hours later the doctors went to see my mammy and daddy and told them what they were going to do and which way they were going to go about it. Well straight away they decided they were going to leave a length of umbilical cord and attach it to the top of my incubator which helped a lot of it go back in on its own. The following day they decided to operate on me to put the rest of it back in they said it may take 2 or maybe 3 operations to put it all back in as it was a giant Exomphalos about 12 ½ cms in diameter but luckily it only took the one operation.

After all this they put me back into intensive care where they put me on a ventilator and a lot of morphine, they gradually cut both of these down day by day until eventually they took me off both. This took about 5 days altogether and then I had a real treat, they let Mammy and Daddy hold me for the very fist time (all be it on a pillow but I didn’t mind that one bit) my Mammy was overjoyed and my Daddy, well he just cried buckets. They held me for about half an hour which was nice, when the time came to put me back in the incubator “boy did I scream” I didn’t want to go back in I wanted to stay with my Mammy and Daddy.

The following day they took me out of intensive care and put me in the high dependency unit which was another step closer to home for me, the day after they put me in there they put me under a U V lamp because they said I looked a little jaundiced this was routine for intensive care babies, hopefully they will take it away soon so I can see my Mammy and Daddy again as I cant see anything because they put a blindfold on me so the light doesn’t hurt my little eyes.

I am now on 7ml of milk an hour, I am getting this through a tube down my nose, they are gradually increasing this every couple of hours so hopefully it won't be to long before my Mammy can start feeding me herself. Today is the 24th of August and because I’ve been such a good girl they are transferring me to Singleton Hospital which is only couple of miles away from my home. This is just to get my feeding sorted my Mammy is now feeding me but I’m finding it a little to much hard work and as a result I’ve lost a little weight, about 320 grams and the doctors are not happy so my Mammy and Daddy have decided to bottle feed me instead.

Today is the 28th of August and the doctors have said if I can put on some weight they will let me go home they are weighing me again in the morning to see if have. Guess what, I put on 70 grams over night so that means I can go home YIPPE!!! My Daddy nearly kissed the doctor when he said he could take me home, I cant wait to see what my new home is going to be like, I already know it's going to be full of love. Well I have to go now I hope you have enjoyed this little story and I hope to see you very very soon, I love you nana and bampi sospan and you also nanna vonnie and bampi pip all my love always.


We would like to give our appreciation and thanks to all the staff at UHW for all their hard work in bringing us Abigail and keeping her well.

Special thanks to: consultant Brian Beatty, consultants with op; Dr Cherian, Dr Milanovic, Dr Huddart. Cardiologist Dr Orhan Uzun. ICU staff nurse Charmaine Clark and in HDU Jay Justo