Ethan and his twin brother were born at 25 weeks and he had a tough NICU journey of 132 days. He had a bowel perforation at 9 days old which resulted in him having his first ileostomy fitted. This was reversed on day 88 and he was discharged without a stoma in July 2015. 3 weeks later he became dangerously ill and had his second stoma due to a blockage in the bowel. He spent another 6 weeks on the children’s ward. He had a relatively normal year until another reversal in June 2016.
He began to suffer with his bowels and became gravely ill in October 2017. He lost half of his body weight down to 7KG at 2.5 years old. He spent 5 months in hospital trying to survive. He was discharged March 2018 TPN dependent, with an ileostomy. We almost lost Ethan several times during this horrendous stay in hospital.
Ethan’s twin brother, Cohen, tragically passed away in Jan 2019 leaving Ethan heartbroken. Cohen received a “Love Quilts” a year previously and we covered him in his blanket when we laid him to rest.
Ethan suffers daily with his health and this leaves him life limited and non active palliative care. This doesn't faze Ethan however, he’s such a fighter and a very strong little boy. The TPN has caused stage 1 liver failure which needs monitoring with many hospital visits, checks and tests. Ethan is such a delightful little boy who lives life to the fullest although he does always wonder why he’s not like his friends and wishes daily to see Cohen and be able to play like other children.