Parenting a Liver Kid in a pandemic (AKA are we homeschooling now!?)

We thought we might put this post together to give some tips on how to manage life at home with your immune-suppressed kid, or kid with a chronic illness during a time of great uncertainty and public health emergency.

This morning the PM said that schools will be staying open. There is conflicting medical advice about whether this is the best approach, but that’s where we are for now. For parents with an immune-supressed or chronically ill child you might decide that school is  not a good idea at the moment. Please note though that the medical advice from NSW is that Liver Kids should go to school unless otherwise advised. 

At our place the kids have been home for 2 days this week – because big sister has a non-COVID19 illness. We took it as an opportunity to set a routine for possible future schooling from home. The suggestions we make below won’t necessarily work for everyone, but hopefully they will help you set something up.

Firstly, if your school hasn’t already been in contact with you about options for your liver kid then you should speak to them about what can be done to support your child. A student with a medical vulnerability should have special considerations put in place, and access to learning, in the event that they need to stay home from school.

I am a high school teacher, currently (and luckily) on long service leave. I have made a timetable for my kids, who are also both in high school, based on their school day. We are starting ‘school’ at 9:30, at which time they need to be dressed, had breakfast and generally ready for the day. Work is done in the lounge room, not in bedrooms. This gives a greater sense of separation between working and relaxing

9:30 – school starts. Work on any assignments they have coming up, studying for tests, doing any classwork uploaded by teachers

10:30 – going for a walk. We live in an area that is not a current COVID 19 hotspot, and it is suburban. You might prefer to do an indoor physical activity – YouTube is a goldmine for finding ideas/tutorials/training sessions

11:00 – break. Their time is their own here

11:30 – back to school. They continue work on assignments and study

12:30 – lunch. Again their time is their own

1:30 – final school session for the day

2:30 – jobs around the house. These can be either day to day things (folding washing), or long term projects you haven’t had time for (going through kitchen cupboards)

A day and a half in, this is working well, but I will certainly change things around as needed. I think if we have to do this long term I would do a 4 day week of the timetable, not 5. As a rule, kids can concentrate closely on a task for about a minute per year of age plus 5 minutes. So my 15 year old might have 20 minutes worth of concentration before a reset is needed. Individual kids will vary of course. So although each ‘school’ session in the timetable is an hour long I would not expect any kid to do one thing for that hour. And if I had younger kids I would schedule in breaks that were shorter, but more frequent.

Your kid will inevitably run out of official school work to do because they will probably work more efficiently at home. I have come up with a list of approved ‘school activities’ that they can do if they don’t have work or assignments set by their teachers. Again, this is based on the subjects they are currently doing at school. For example:

• Reading a book (fiction or non-fiction)
• Listening to a foreign language podcast (you can find these online, including on Spotify)
• Practising a foreign language (Duolingo is an excellent free app for this and has a lot of language options)
• Music practice
• Sewing or other craft
• Personal interest research (which they can share with the family)
• On-line learning (your school might subscribe to Mathspace, Education Perfect, Spellodrome or similar)
• Working through maths or science textbooks
• Drawing
• History or geography research on a topic of interest
• Educational YouTube videos
• Creative writing

There are lots of other things you can do that are educational, eg:

• Cooking
• Learning to touch type
• Age-appropriate life skills
• Board games
• Puzzles

And remember if there is work your child is set that you aren’t sure how to do…well that is what the internet is for. Until yesterday I didn’t know how to autocreate a line graph in google sheets, but now I do. If there is something that you kid is really having trouble understanding or working out, don’t worry about it. Move on to something else and come back to it later. Or don’t. If it is vital for their education they will have the opportunity to learn it when they are back at school. Remember that the important thing about school is the process of learning and problem-solving, more than the individual facts they will learn.

The Power of a Community

The Liver Kids Family Fun Day in Sydney in late September was a fantastic and fun reminder of the benefits of being part of this community, connected by the unique experience that is childhood liver disease.

First defined by the ancient Greek philosopher Aristotle, a community is usually recognised as ‘a group sharing or having certain attitudes and interests in common’. This is particularly true in the case of health conditions, where there may be no connection between people other than the experience of the disease they share.

Where rare diseases are involved, there are many benefits that can come from being part of a community, a key one is a sense of belonging. Community members have a shared experience which may not be understood by family members and friends.

That sense of belonging often leads to meaningful mutual support. Having a community to rely on means you have access to people who know what you are going through. In the case of a new diagnosis of liver disease, other families have been there too and can give the benefit of their knowledge and experience for reassurance and point you in the direction of resources that can help answer your questions.

Access to resources is another key facet of the benefit of a community. No matter how smart you are or how much time you spend searching Google, it is impossible to know and do everything by yourself. Access to a community means that new ideas, resources and experiences can be shared and discussed, to the benefit of all members. In the healthcare setting, a strong community can also provide access to key subject experts. The families who came to the Liver Kids Family Day were lucky enough to hear an amazing and inspiring update from Dr Gordon Thomas on the incredible leaps forward in liver transplantation at The Children’s Hospital at Westmead. There was also the opportunity to talk one on one with him and other members of the Liver team.

Possibly the greatest successes a healthcare related community can have are in creating impact and influencing change. The voice of a group will have a larger influence than the voice of an individual. As a community we can work together to achieve real outcomes that will have a positive impact on the health of children with liver diseases and post liver transplant.

We are lucky that our families, and most of all, our Liver Kids, can meet each other, develop supportive friendships and build a strong community. This way we can learn together, support each other, contribute to improving diagnosis and create better resources for future Australian children born with a liver disease.

The Liver Kids community is very young in comparison to many others and there is much we can do. As part of this community, what would you like to work with us to achieve? What are the milestones we should be reaching together? And how should we celebrate our successes?

Being Your Child’s Health Advocate

We recently had a 5-day hospital stay. It was the first one in 18 months and was at our local hospital, some 300kms from our liver specialists in Sydney.

The experience reminded me how important it is to be a strong advocate for your child, not only to ensure that they receive great care but also that they are comfortable and confident in the hospital setting. After all, hospital visits, bloods and invasive procedures are a fact of life for our Liver Kids.

It’s vitally important to remember that the medical and nursing teams are working for the best outcome for your child. However, different hospitals and teams might have ways of doing things that won’t be familiar to you and may make your child upset or uncomfortable. It’s absolutely OK to raise this with the hospital team and ask them to do things differently based on your experience of what works for you to keep your child calm and comfortable.

Key Points when Advocating for Your Child

Understand the Details of Your Child’s Condition and Medical History

The first medical and nursing team members you come across will probably not be familiar with your child and their history. You need to be able to provide a clear summary of their history including details of all medication. Keep a record in your phone so you can easily refer to it. If you are in a regional hospital rather than one of the Liver Centres, reinforce that you and your child are experienced in a hospital environment and expect to be involved in decision making about your child’s care.

Ask Questions

If you are not sure why a course of treatment has been suggested, ask the doctor looking after your child’s care for a full explanation and ensure you understand before you consent. Results of blood tests and procedures such as ultrasound and x-ray should be explained to you in the context of the treatment plan.

Involve Your Child

Even when they are a tiny baby, talk to your child about what is going on and involve them (at an appropriate level) in the discussions about their condition and treatment. As they grow up, they will need to take on responsibility for their ongoing care and should be confident that they have the right to ask questions and understand what is happening to them.

Know What Works for You

Different hospitals may have different ways of doing standard procedures. As an example, if your child is more comfortable staying in their bed for a cannula insertion but the standard is to go to a treatment room, you can request to have the procedure done at the bedside by explaining that your child will be happier and more compliant, with less disturbance. Similarly, you may know which veins are best and which locations will mean your child can still use their hands for drawing, reading, writing and gaming.

Resources

There are plenty of resources online to help you build confidence to advocate in the healthcare and hospital setting. A good place to start is with Liver Kids friend, Dr Angela Mackenzie through her website http://www.everybodystaycalm.com/resources.html

The Result

Fortunately, by making sure we played an active part in her care team, despite daily blood tests and 3 cannula insertions, my daughter’s assessment of the worst aspect of her hospital stay was that it was ‘very boring being stuck in bed’. We thought that was a pretty good outcome!

What’s Life Really Like Post-Transplant?

If you are the parent of a newly diagnosed Liver Kid, or you have a Liver Kid who has recently had a transplant you will have a lot of questions about your child’s future. You want to know whether they will have a normal life, or whether your family will ever get away from hospital life, or whether having a transplant is just switching one problem for another.

My Liver Kid is nearly 9 years post-transplant, so I thought it would be worth sharing our experiences so that you can see that there really is light at the end of the tunnel you find yourself in. Of course, every child’s experience is different, and I’m not a doctor, but I have been where you are now and come out the other side.

I won’t go into the entire pre-transplant story. It’s enough to say: biliary atresia, failed Kasai, transplant at 16 months old. One major difference between then and now though is that there was a real shortage of donors when my Liver Kid was on the waiting list, and many children were a lot sicker before they got a transplant than they are today.

But, to get back to the point of this post, what is it really like having a Post-Transplant child? Well, the short answer is that her life is no different to any other kid her age. She goes to school, she plays with her friends, her bedroom is messy, and she loves her family. Of course, we take good care of her health and we’re pretty focused on hand hygiene. We all have a flu shot each year to help protect her, and we are very careful with sun protection. She sees her Liver Team 4 times a year and has a blood test each time. She has an ultrasound once a year, and 3 years ago she had a routine biopsy as part of her post-transplant protocol.

She has not been admitted to hospital due to a fever for 3 or 4 years, in fact I honestly can’t remember exactly when it happened last. Initially we were worried that she would become terribly sick whenever she came into contact with illness, but that hasn’t happened. When she gets a cold, it’s just a cold and she is no sicker than anyone else in the family. In fact, she has to see our GP less frequently for minor illnesses than our older daughter.

That’s not to say that we are casual about her health, we do take it very seriously. If she is unwell we watch her closely and if in doubt we take her to our GP. But most of the time her transplant is just a normal fact of life and the routines around it like taking meds twice a day are just another thing we do, like supervising homework or planning dinner.  These days she only takes 1 tiny capsule twice a day, nothing like the amount of medication she was on immediately post-transplant.

Because she was so little when she had a transplant, everything about her health routine feels normal for her. She doesn’t like having her bloods done (who does?), but she knows it is just something she has to do. She doesn’t really feel any different to other kids, and she does pretty much everything that other kids do. She has been on school camps, and gone to sleepovers. We go on holidays and hang out with other families. Although we take special care of her, we don’t wrap her up in cotton wool and keep her away from other people.  One day she is going to be old enough to make decisions about her health for herself, and we want her to know that it is OK to do most of the things that other people do.

I remember that before our daughter had her transplant one of the consultant nurses gave me some great advice: ‘Liver transplant is the only treatment for biliary atresia, but the good news is that it’s an excellent treatment.’ In our experience that has definitely been the case.

Click HERE to download the Infographic

More about growing up post-transplant

Transplant recipient Libby Mutimer gave a great presentation at the 2016 Liver Kids Conference and Family Day about growing up post-transplant. See it here

Need Support?

Liver Kids Australia has a network of experienced families who can provide support and advice whatever stage of liver disease diagnosis and treatment you are up to. Contact Rachel on 0407 061 634 or at rachel@liverkids.org.au