Morgan’s Story

Veronica: It was a complete shock when we got into that fifth week and we did the biopsy and it came Biliary Atresia, and the same day the doctor came and said, okay, we’ll do the operation tomorrow, my husband and I were…

It’s a life-threatening, you know, illness, it’s a lot to take in. There’s no option, there was no option, so, yeah it was an experience.

Morgan: Well I’m in year six and I like drawing I like the movies and I like roller skating and I also like playing netball and hanging out with my friends.

Veronica: We had a paediatrician came to see her and then, when she saw how yellow she was and the blood test, she said look it could be nothing, or it could be Biliary Atresia. It’s very rare.

Biliary Atresia, what it is in simple terms, is the bile ducts that they are, we have inside the liver and outside the liver, some of those ducts, or they are fibrosis, so sort of they don’t exist or they’re blocked, and your bile doesn’t flow through your system.

So, we did the biopsy and then the doctor came to see us, we have an opening for tomorrow, and we were first parents, it’s just a bit of a shock. She was only six weeks old. So then they put us, they would say yes, we need to do it, so they did this procedure; was around eight, ten hours operation. Success. I remember one of the things that show you if it’s success or not is the colour of the poo, and it was normal. This operation, the idea is that if it’s successful you can extend the life of the liver you’ve got and then it gives you more time to grow and get a better liver later in life.

Between eight and nine we noticed quite a bit of a decline and the doctors the same. You get sort of water inside your belly and that makes that your belly becomes bigger and bigger with time.

Morgan: Well no one at my school could really tell. It was kind of hard for clothes to fit because, like, there’s a big ball on my belly.

Veronica: The other things that I could notice obviously were energy levels in comparison to other kids you will see kids running, running, running; she was sitting drawing.

Then it was decided to put her in a transplant list. Before we can put in a transplant you have to visit quite a few doctors and do lots of tests, so we spent quite a bit of time in hospital the year of the transplant. And then once going onto the list we were lucky enough that within a month we got the call – transplant. It was in the middle of the night, around 11, that we need to be in hospital around five in the morning. We woke up Morgan – ‘Morgan, do you want to come?’ – but then she realised, yep, I want to come, I’m ready.

And then we go to hospital they do all the preps, and then ready for the operation room.

Morgan: My dad put on this silly cap.

Veronica: Yeah, we all put the silly caps on and there was lots of people, lots of machines, and we have to give her a kiss until she went to sleep. And then I think the operation lasted around 12 hours or so.

To see her, she was connected, so it’s quite a big shock when you see your kid connected to a lot of things.

Morgan: So I got out of bed after my operation and I told mom that this is what it feels like to be alive.

Veronica: So she spent 10 days in ICU and about a couple of weeks, a bit less, in in a ward.

Morgan: And then I got to leave on my birthday.

Veronica: That’s right, yeah, that’s right.

Morgan: Oh yeah, well all the teachers at school said, ‘Are you okay, honey you look so different…’

Veronica: Her face changed completely.

Morgan: Yeah, they like I would like now like yesterday I was running around we were playing tag and it was really fun, so, yeah, I did notice a bit. Yeah, when I left hospital I had a lot of medicine.

Veronica: We are almost two years after and we just with one medication, which is the anti-rejection medication. It seems like it was not that long ago, but it feels really far away, which is a good thing.

My advice to other families or kids with Biliary Atresia will be to first follow the doctor’s advice to the T – so take the medications when they need to be taken, follow exactly what they said, and for the kids just be yourself, it’s not much different than any other kid and everything will get there at the end.

Morgan: My advice is to not worry about it because the doctors know what they’re doing, and that you just need to trust the process.