Hi my son Daniel was born 19th Oct 2006 with Gastroschesis

Hi my son Daniel was born 19th Oct 2006 with Gastroschesis, he was born 4 weeks early as his heart rate was dipping, I was then transfered 1hours drive away to Edinburgh were he was delivered, normaly weighing 4lbs 5oz, when he came into the world he was taken away straight away and i never got to hold him (alot of people do get a little hold) he was then taken to Edinburgh Sick Childrens Hospital Neonatal Unit (small babies ITU)  when I arrived his bowels were in the silo (condom looking bag) and he looked so peacefull and calm! he had his surgery to put the bowel back in 2weeks later and 3days after that was the 1st time I got to hold him, Daniel would not take to the breast milk I had been expressing or the neonate the hospital gave him, it was constant sickness with bile and blotedness of the stomach, he was in itu for 3months and developed a blood clot which was very upsetting, he also received 7blood transfussions which was also very upsetting but done daniel good.

He was then taken to High Dependency unit were he got alot of bugs, flu, broncutis and was realy unwell off and on, it was a horrible devestating time were we thought he was never going to recover! eventuly he was taken down stair to a ward, we thought yeh this is it, hes getting better, alought he was only getting 3ml of milk each hour and still being sick.

Just when we thought it couldt get any worse he developed a condition called NEC (a very severe bowel infection) this set him back yet again, off all milk for 2weeks and on very strong antibiotics, this passed and 1week later he got it again, after the 2nd time he wasent getting any better and wasent feeding and was starting to get very jandice with the TPN as he had now been on it 5months, we were told to prepare ourselfs for a liver transplant as he had to get TPN as he wasent feeding, he was booked in one monday morning for surgery to go in and see if they could find out why he wasent feeding and could not hold it down, he then got  his 4th line infection (the tube the TPN goes threw) when this happens TPN has to stop, and as he was to ill for surgery that was cancelled, we were  just about at breaking point by now (we had 2 children at home so I was travling up to Edinburgh every day, 1hour away)

 2days after the surgery had been cancelled something amazing happened, Daniel started to take his milk and keep most of it down! (still threw the NG tube, not by mouth but who cares he was getting better at last) we than got to take him home with only his NG tube and 11 medicines, he was 6 months old. He was still quite ill when home but quickly got better, slowly putting on weight at 1st then he did start to put some on, He is now 2 and just amazing he is just a normal 2year old, the only tell tale sighs that he had this condition is he poos often and either eats like there is no tommorow or goes off food, he is now at normal weight and height for his age tho which is brill.

Dont let this story put you off as it not usually as bad as this! and dont give up hope as your baby will be very normal.