If somebody asked me to talk about Clara there’s so many things I could say: “She’s my beautiful daughter!”, “She’s got beautiful dark long hair”, “She’s got the most incredible long legs that she definitely didn’t get from me!”
Or, I could say: “she was born prematurely”, “she’s got a very rare bowel disease”, “they told us she’d likely not live beyond the next 24-48 hours”, “she’ll spend her first year, at the very least, in hospital, if she lives that long”.
Clara Smithson was born 5 weeks early on the 19th December 2017.
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.
The first two weeks of Clara’s life were mainly spent in High Dependency on the Special Care for Babies Unit (SCBU) with terrible jaundice. We hoped for Clara to come home, but she hoped to stay in, to get the help she needed but couldn’t tell us she needed so desperately.
On 1st January 2018, Clara was moved to intensive care.
On the 2nd January 2018 Clara had emergency surgey and lost 75cm of her bowel. 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 with heterotaxy (her stomach, liver, and spleen are all in the wrong place) and a rare bowel disease that’s led to Short Gut Syndrome.
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 and has also been diagnosed with Auditory Neuropathy Spectrum Disorder (an unknown degree of hearing loss).
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.
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.
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