Thu 10, Feb 2022

Levi’s parents learnt he was born with anorectal malformation (ARM) when he was two days old. Now, three years later, they are navigating toilet training and understanding if he has regular healthy bodily sensations. Levi was born in Echuca and airlifted out to another hospital three hours away. His parents were told via phone that Levi needed a stoma put in, because there was no connection between his bowel and his bottom.

Dr Sebastian King had operated on Levi and was careful to drip feed his parents information to prevent them feeling overwhelmed. He put them in touch with 1 in 5000 Foundation, a resource for those impacted by ARM, established by Greg Ryan. The Foundation, as well as Facebook groups Levi’s parents were able to join, provided great support and connection at a time otherwise clouded by confusion. When Levi had his second set of surgeries in November of that year, the Royal Children’s Hospital held a conference with Dr King and Greg Ryan in attendance as well as other parents and psychologists. Although Levi’s condition is on the milder side, a lot remains uncertain.  Levi has responded very well to a change in diet, such as an increase in pears and mandarins.

Levi’s parents say the greatest advice is to be vulnerable and put your hand up for support. Every parent is winging it to a certain degree because every child is different. This is an unfamiliar field for most parents, so people just share what works for them and their families. Levi’s knowledge extends to him having a sensitive stomach and he expresses frustration at having to sit on the toilet longer than other children.

A big brother to little Angie, Levi is a chatty little soul with a great imagination who is very smart for his age.

 

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