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Leo all wired up

We went for our routine 12 week scan in Amsterdam, where we were living at the time. We got a big surprise when we first of all realized I was having twins, and secondly that one of them had an abdominal wall defect. Once confirmed that it was Gastroschisis we decided to move back to the UK, feeling we would be better in an English speaking place and with a bit of family around us.

The pregnancy went fine, although there was extra check ups mainly because of the twins, but both were growing well and the Gastroschisis seemed to be ok. I was booked in for a C section on Jan 9 2005, on Dec 19 2004, my waters broke, we went straight into Brighton Hospital, and at 1.00am on the 20 Dec my boys were born. They were identical twins.

A sleeping Leo

Leo the baby with Gastroschisis, was born first, his guts were wrapped in a surgical cellophane bag, and after a quick hello, he was taken straight to The Royal Alexandra Children’s Hospital. His surgeon was Dr Mohammed, and he managed to perform a primary closure, which means that all his guts were put back in and his tummy sewn up. He was then brought back to us, and was put in the Trevor Mann intensive care unit. The first time I saw him he was in an incubator covered in tubes and machines, his brother was by my side in a wheely bassinette, and I was in a wheelchair in a lot of pain from my c-section and quite out of it. I remember looking into his tiny face and feeling that he looked really angry to be there, and that made me smile because it meant he was strong!

We went back down to our room, it was later in the evening now, we were all tired, baby Gee, Leo’s brother, was in my arms suckling, we slept. A midwife came in at around 2am, to check us, I looked down on baby Gee and saw he was not right. Baby Gee had died in his sleep from SIDS. I could write forever and ever about this, and add every minute detail, but this is Leo’s story. My heart broke that night forever. Leo continued to go from strength to stregnth, within 24 hours he was off the life support, and in the high dependancy ward rather that intensive care. We were able to hold him for the first time, he was amazing. He opened his bowels after a couple of days .

In recovery
We never really left his side, and we were able to stay in a spare room thankfully, when we needed to snatch some sleep. Because of this we were able to do all of his care ourselves and learned what all the different machines and numbers meant. I was expressing like mad and we had a backlog of milk ready and waiting. His first ever milk feed was through his NG tube, we were so excited, Alex held the syringe and pushed the 1mm of milk down the tube that went through Leo’s nose straight down into his belly. 2 hrs later we aspirated to see if he had digested any or not, and so it went on feeds and aspirating, waiting for the tube to return milk rather than stomach bile.

He did start to digest, I don’t remember when he had his first breast feed, and I just remember it hurting! He was good though and didn’t refuse which I had been worried about. One by one all his tubes came off and TPN came off and Apnea came off, It was quite novel to hold him without things attached to him. Leo was in hospital for just 19 days, and then he came home with us. At three months old he had to have more surgery as he had scar tissue growing around his guts from where they had been handled. so the same surgeon, who we believe is amazing, performed the operation. He was back home within a week and once again we were able to be with him the whole time.

Leo and Cinnamon
Leo is now 2.5 yrs old, he is larger than life, a proud toddler, my hero, and a terrorizing big brother to his baby sister Cinnamon, who was born fine and well with zero incidents. Leo eats fine and poos fine and I am looking forward to him getting out of nappies! I think his scar looks pretty cool too! We now live in Byron Bay Australia, and I am more than happy to be emailed or to meet others who have had similar experiences. You can contact me on