We were just your average happy-go-lucky couple, living in a lovely peaceful village, working hard and travelling when we could, before our daughter was born.
Then Clara turned our world upside down, born 5 weeks early in December 2017, and finally we had what we’d been subconsciously looking for.
At first we joked that she was so excited to get an extra Christmas in. After all my waters had broken whilst wrapping Christmas presents listening to Xmas FM on the radio. But two weeks after she was born, we realised it was a lot more serious than that. She knew she had to get out – to give us the opportunity to spend some time with her, and to get the help she urgently needed to be able to survive. If she was born on time, we most likely never would have met her alive.
Clara has Short Gut Syndrome (also known as Short Bowel Syndrome), as a result of volvulus with malrotation (her intestines were twisting). She also has Auditory Neuropathy Spectrum Disorder (hearing loss due to the auditory nerve not functioning as designed) so she wears hearing aids. She also has Heterotaxy (including multiple spleens and two left atriums in her heart, she’s pretty cool!)
On 1st January 2018, Clara was moved to intensive care.
On the 2nd January 2018 Clara had emergency surgery and lost the majority of her small intestine. We were told she may not live beyond the next 24 – 48 hours.
Clara then remained in Intensive Care for three more weeks, fighting for her life.
Clara moved to the surgical ward in the Children’s Hospital for six months – but was initially expected to do so for at least a year. She has since had eight surgical procedures, but has lived at home since she was 6 months old.
Originally, the next paragraph read: “Clara will be on TPN, total parental nutrition, for a number of years. This means she’s fed nutritional fluids intravenously via a Hickman Line, a type of line that goes in through her chest and feeds into her main vein draining into her heart.”
However, against all the odds, Clara is no longer TPN dependent, her Hickman Line is out, and she’s lived at home since June 14th 2018. She is the definition of a living miracle.
Clara now attends pre-school and is a very happy, chatty, nearly 3 year old.
Follow our journey, catch up on our blog posts, as we share updates on Clara’s progress and family life with Clara’s rare conditions.
For regular snapshots into our daily life and what Clara eats to fuel her brain and body, follow us on Instagram @shortgutsowhat