Childhood Liver Disease and Transplant in the Social Media Age

So first, a disclaimer: when my liver kid was diagnosed and had a transplant in 2007/2008 social media wasn’t really a thing. And I certainly didn’t have a smart phone in the hospital with me. This means that my experience was quite different to today. Of course we googled ‘biliary atresia’ after our first specialist visit, and saw all of the information about possible outcomes – liver transplant being the most likely. Looking back, I don’t think reading this information helped me. Really, it just added more stress to what was already a traumatic experience.

Today, there are hundreds of Facebook pages following children’s liver transplant journeys. Searching Biliary Atresia alone, brings up 145 pages and 76 groups, as well as fundraising websites telling harrowing stories of illness. This means that there is a lot of information out there for parents who are looking for it. For many, this is reassuring, you can see that other people have had similar experiences and might understand what you are going through. It’s really tough to go through liver disease with your child and it’s natural and helpful to seek information and support from others who have shared the experience.

But there is a definite downside to all of this information and there are 2 main reasons.

Liver Disease is Very Individual

Firstly, as your child’s clinical team will tell you, liver disease progresses at different rates and with different symptoms or side effects in each child. So if you are reading terrible stories from other parents you can get the impression that ALL of those things will happen to your child. You will worry about things that might never occur in your case, adding to the number of things you already have to worry about.

If you read anything that disturbs you, talk to your child’s team and ask all the questions you can. Trust their answers and remember that you can always ask for a second opinion if you are really concerned. Remember that your clinical team have seen hundreds of patients and have decades of experience.

Place Does Matter

The second problem with all of the information that is online is that much of it is irrelevant to the Australian experience. We have universal health care and people receive the same treatment regardless of income or status.

That is not the case in the USA, which is why so many stories out of the US are so bleak. Some children don’t get the medical care they need because of insurance or financial issues. The story of an American child waiting for a transplant is not a good indication of the experience you and your family can expect.

Check Facts for Peace of Mind

So, how do you know which sources are worth looking at online? Australian government websites are trustworthy, as are the websites of reputable Australian, US and UK children’s hospitals. When you are reading online articles, do some fact checking:

1. Can you find the information they present on other sites?
2. Is it written by someone with medical experience?
3. Is the health system they describe similar to Australia?

If you can answer yes to at least a couple of these questions, then the information is likely OK. But if you are reading information that is describing just one person’s experience, or is trying to raise money for an individual, be wary. It doesn’t mean it won’t be useful to you, but you risk being misled by information that won’t apply to your family’s experience.

Information about organ donation rates and the wait on the transplant list is particularly prone to mis-representation but easily checked. You can find up to date information on the DonateLife website.

Liver Kids have also added a Useful Information section to our website to help you find some facts.

(click HERE to download the infographic)

Sharing Your Story

Don’t feel as though you are obliged to share your own story on social media either. You will want to keep your family and close friends up to date with what is happening, but consider making that private.

Very important reasons for social media privacy in the case of transplant are to protect the identity of your child and the timing of transplant when it does happen. While you will want to thank your donor family, you may not be ready for them to contact you directly as a result of finding you through social media.

It can be hard to stay focused on the future when you are in the middle of a liver disease diagnosis and treatment, but the outcomes in Australia are excellent and in later life, your eye-rolling teenager won’t thank you for publicly sharing all of the details of their childhood illness.

Bottom line – this is your journey, don’t feel that you have to share it with anyone unless you want to. And try not to take on the burden of anyone else’s experience either. You are on a hard road, be kind and make it as easy as possible for yourself.

Need Support?

Liver Kids Australia has a network of experienced families who can provide support and advice if you have a new diagnosis or are waiting for a transplant. Contact Rachel on 0407 061 634 or at rachel@liverkids.org.au

Featured Photo Credit: http://www.hastac.org

A New School Year

Across Australia, the last week of January means the end of summer holidays and the beginning of a new school year. School age children mourn the loss of freedom, while many parents rejoice at the return to routine and (hopefully) a tidier home!

For those starting their first year in school, or moving from primary to senior school, there is a lot to prepare at this time of year. New uniforms and shoes, backpacks, lunchboxes, drink bottles, pens, pencils, books to be covered and all those nametags to be stuck on!

There are also all the worries kids have about a new school year: What will the teachers be like? Will I make new friends? Will the classes be lots of fun or too hard?

Liver Kids and their parents have all of these same activities and thoughts at the beginning of school, and a few more….

With a post-transplant Liver Kid starting Kindergarten this year, I found myself wondering what the new world of school would mean for us.

We have already experienced day-care and the seemingly endless sniffles and sneezes, as well as pre-school with the rough and tumble of the playground. What differences can we expect this year? And what should we talk to the teachers about to make sure they understand the health needs of our Liver Kid?

Fortunately, being part of the Liver Kids Australia community means that I can ask advice from other parents and learn from their experience.

Top Five Tips for Starting School

1. Be your child’s advocate

When your child starts school it is important for their teacher to understand the situation. Even if your child is very well, there might be things that you need to have modified for them, particularly in PE for example. Arrange to meet the teacher as early as possible in the school year, the week before your child starts is ideal. Keep in contact and speak up if something is happening that you aren’t happy with.

2. Teach your child how to advocate for themselves

This might be the first time your Liver Kid is spending lengthy periods of time away from the family. Make sure they knows it is OK to say if they feel uncomfortable with something. Talk to them about why it is important to keep healthy, and how to do that.

3. Focus on hygiene

Schools are full of germs, no question about it. Ask for hand sanitiser to be used frequently by everyone in your child’s classroom. Ask that your child is not sharing equipment with other students where possible. Tell the school you don’t want your child to share food with other students.

4. Normalise your child’s experience

There will be times when your child realises that they are a little bit different to the other students (blood tests, clinic visits, scars etc). Encourage your child to take a matter of fact approach. Sometimes there might be things they can’t do, and that’s just the way life is.

5. Don’t be afraid

It’s really hard to step away from constant involvement in your Liver Kid’s life. Trust that the school is staffed by professionals who know how to look after kids with a huge range of needs. Remember that this is a really exciting step for your child!

Resources

If you would like some information to help you have a conversation with your child’s teachers, Liver Kids has prepared an information page that you can leave with the school for their reference. You can download it HERE

If you have any questions or concerns about your child starting school or suggestions for other members of the Liver Kids community, don’t hesitate to email us at rachel@liverkids.org.au and we will get back to you as soon as possible.

Good luck to all our Liver Kids for the 2017 academic year.