“Never give up hope” – Shanaya & Shruti’s story

Shanaya’s favourite drawing.

From an interview with Shanaya’s mum, Shruti.

A month ago, my five year old daughter Shanaya was diagnosed with IBD.  On the 16th of February we found out she was not comfortable going to the toilet. She was spending more time in the toilet, and there was a lot of blood. That was the initial moment where we thought “what’s going on?”. We took her to the GP and then started consulting every few weeks. It was first diagnosed as fissures, and in March, she started complaining of stomach pains too, which was not initially an issue. Every week it was getting worse, and it was a very hard time.  

I started getting anxiety attacks because, especially in the morning, when she had to go the toilet, it was like a nightmare. She used to literally scream. Of course, there was a lot of blood loss as well. One Friday, I followed my mother’s instinct and said, “no.” I had a very important meeting to attend but I left everything and took her to emergency. I went to the Monash Children’s hospital and explained the situation to them. They admitted her in a couple of hours to check on her as she looked very pale. From being a perfectly healthy child, I could see she had lost weight. Within a few weeks she lost almost three kilos. Her eyes were obviously sunken, and her face was so pale. On her hands we couldn’t see much colour from her blood circulation as well.  

The doctors did a few blood tests on her, as well as an iron transfusion. They also said they might have to do a blood transfusion as well because she lost a lot of blood within those few weeks. Then they suggested a scope for the week after. Following the gastroscopy and coloscopy,  they diagnosed her with Crohn’s disease. As a parent, of course its not easy for me. I didn’t want to even hear it. I was like, “no she doesn’t have it,” but then I had to face the reality. 

The Monash Children’s Hospital was really good. I can say I’m very lucky I live just 15 minutes from The Monash. Even when she wasn’t diagnosed they were very prompt in responding to our concerns. Considering how little she is, I think they took it very seriously. They took very quick action. I’m still figuring everything out as it’s all pretty new for me. It’s been about a month since she was diagnosed, and she’s still on steroid doses. She is doing well I would say. We don’t have much information about her diet from the hospital as yet. We are going through this ourselves, to see what reacts with her and what doesn’t. She’s not eating dairy now, and we will slowly introduce that, but we’re not sure when. 

I don’t have much of a support network, but my area manager’s daughter has ulcerative colitis. I think she kind of knew based on her symptoms that my daughter had Crohn’s disease or colitis. That’s why my daughter is a member of Crohn’s and Colitis Australia now.  I’m in a position right now to raise some awareness about this as well. I’ve also joined some online groups, where parents can hear each other’s stories, good stories, about how well their children are doing. It makes me feel okay that my daughter has IBD. As a parent I’m still learning, I think it’s a shock for me, as I knew nothing about it. But, but in the end, this is the truth. It’s good that she got diagnosed early so I can control and manage her medications and her diet.  

There will be challenges in time. For instance, we’ve got a birthday party coming up. It’s already making me nervous because she can’t eat whatever’s provided. The good part is that the party is with one of our very close family-friends. There’s also the social stigma that scares me because right now she’s only five. She doesn’t know much, but she will go out eventually with her friends. She’ll go on camping, she’ll go out on parties, and you don’t know what’s going to happen. That’s a worry that is in the back of my mind. As a parent, every time she goes to the toilet, it scares me. I hope she’s okay, but it’s a constant battle. 

From my experience, I would suggest that others listen to their instinct. I believe in God, and I thank God that I listened to my instinct. If you feel as a mother or father or guardian, whoever you are, that something is not right with your child, there’s no harm in going to emergency or to your doctor or the relevant departments. Also, never give up hope. Support each other and work to build a community that can build support and raise awareness.  

I have been childcare manager for 12 years. I knew nothing about Crohn’s disease, which now shocks me, but it can happen to anyone and at any age. There needs to be more awareness. Let’s talk more. We need to stop hiding. Let’s come out. Let’s raise awareness through talking to each other. 

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