Ethan was born at 30wks by crash section. Once intubated after being resuscitated, he spent time on Neo Natal. On day 4 when I finally got to see him, we were told Ethan wasn't well. After a lot of toing and froing it was decided he needed to be transferred to Alder Hey, 1 1/2hrs away from home. He had perforated NEC and needed surgery. We got sorted, said goodbye to our other 2 boys, age 8 and 18months and set off. 1/2hr down the road, we got a phone call to go back as Ethan wasn't going to make it.
The Alder Hey retrieval team were struggling, and eventually we set off again. Arriving at Alder Hey we were told Ethan hadn't arrived as he was too poorly. After what seemed like hours, he arrived a very poorly baby. The surgeon told us to quickly say goodbye and off they went to surgery. Hours and a shift change later, the team spoke to us. They had removed his bowel as it was necrotic. We were so grateful. Sitting next to his bed on PICU, a room full of medical staff, he was the colour of the sisters uniform. I said he shouldn't be that colour, she said 'sorry, but there wasn't anything more they could do'.
Well after 7 weeks on an oscillator, a further 5 on a ventilator, more life saving surgery, a brain scan (they thought he was brain dead a week before Christmas) heart surgery, he finally made it to HDU. That 6 month stay was also eventful, 2 cardiac arrests setting him back to PICU again. Going into Liver Failure, being rushed to Birmingham Childrens, being told there was nothing they could do, so to try and enjoy some time with him back at Alder Hey.
We went to E3, the long term gastro ward, again eventful, 2 more cardiac arrests, many respiratory arrests, more surgery all resulting in PICU stays.
After a long 18 months we made it home. All the doctors were as surprised as we were.
Ethan is now 10. He's been through such a lot in his life. He became a big brother to Isla, and over the years has proved so many wrong. He learnt to walk, although still uses a wheelchair when out. He babbles and has the cheekiest laugh, and an amazing sense of humour! Before Covid, he really enjoyed school and kept his class thoroughly entertained.
His health has deteriorated over time; he's reliant on 16 hrs of TPN, his liver has got worse and he suffers internal bleeding, his spleen is very enlarged so he has low platelets and a compromised immune system. For many reasons he's an unsuitable candidate for a bowel and liver transplant. He now has an ACP in place and we have amazing support from Alder Hey and our local hospice.
Ethan is the happiest little boy and a joy to be around. We're all very lucky to have him and will be forever grateful to Alder Hey.