There are many forms of childhood liver disease and as we often say, every child’s experience is different. One aspect which unites almost all our parents, however, is that liver disease in children seems to invariably lead to a lack of sleep – in children and their parents!
“My six-year-old daughter, who has biliary atresia and was transplanted at ten months, didn’t sleep through the night until she was three years old,” says Ashleigh. “I always put it down to her being in hospital for the first three months as she was born with bowel perforation and then lots of admissions and being disturbed during the night for observations and checks”.
Katie, whose son has PFIC, was also three before he slept through the night. “He fed every hour for the first year,” says Katie. “And co-sleeping was the only way I manged to get any shut-eye. It was a struggle but I’m grateful for all the extra cuddles!”
We have also heard that even when children do go to sleep, it may not necessarily be peacefully:
“Emily who is eight and has biliary atresia, talks and shouts out in her sleep even now,” says her mum, Alex. “I would say that at least five nights a week she has a dream which wakes her up. We have now mastered the art of telling when she is talking in her sleep and it doesn’t really seem to upset her. In fact, sometimes she likes to laugh at the random things we tell her she’s said.”
It’s not only children who are born with liver disease who suffer from disturbed sleep:
“Our son, now eight, had a liver transplant when he was four, following sudden acute liver failure,” says James. “His difficulty in sleeping occurred post-transplant and was not an issue before. He self manages not being able to sleep to be fair to him. He will usually pass the time by reading at first and then he will lie in bed trying to spot star constellations or setting himself a question or challenge to think about, like what he would need to do to build something out of Lego.”
The wealth of available information on sleep training isn’t necessarily helpful, as Kirstin, whose daughter had a transplant at six months old, points out:
“Being sleep deprived impacted our capacity to cope, it was honestly one of the hardest things to deal with. We were constantly told in hospital and by some family and friends to ‘let her cry it out’. I know this kind of ‘sleep training’ is a popular method that many people encourage when parents are struggling but we couldn’t bear this given all she went through. She needed reassurance and comfort; we didn’t want her to feel like we didn’t come when she cried. So, we never did sleep training, we co-slept or took turns and consequently we were very sleep deprived for years, which impacted everyone around us. We know others who did ‘sleep training’, out of desperation and pressure from families. From a developmental viewpoint there seems to be a growing body of scientific evidence to say this method may have an impact longer term, on mental health and relationships later in life, something our liver kids could do without. I’m sure there is lasting guilt in both camps, more evidence-based sleep advice is needed for parents of children who have experienced prolonged hospital time.”
As sleep disruption is such a widespread issue, we asked Aoife Marley an Assistant Psychologist, who spent 18 months working with young people and families at Birmingham Children’s Hospital, for some information and guidance.
We know that problems with sleep are relatively common in liver disease patients. Families have spoken to us about insomnia, waking up in the night, and continuous itching making sleep difficult.
On top of this, young people sometimes struggle with worries and anxiety about their health, the future, and being in hospital settings. This can keep them awake at night. For children and teenagers, sleep can also be affected by puberty and changes in routine.
Sleep Recommendations
The recommended length of sleep varies in different age groups, as per NHS guidance1:
- New-born babies 0 to 4 months old – 8 to 18 hours (including naps)
- Babies 4 to 12 months old – 12 to 16 hours (including naps)
- Toddlers 1 to 2 years old – 11 to 14 hours (including naps)
- Children 3 to 5 years old – 10 to 13 hours (including naps)
- Children 6 to 12 years old – 9 to 12 hours
- Teenagers 13 to 18 years old – 8 to 10 hours
- Adults 19+ – 7 to 9 hours
Good quality sleep is defined by the sleep foundation2 as when the time it takes to fall asleep is less than 30 minutes, wakefulness once asleep is under 30 minutes, we achieve an age adequate total sleep length, and the percentage of time in bed spent asleep is more than 85%.
Sleep is vital for our wellbeing and can have a huge impact on our ability to function in daily life. Studies show that poor sleep can affect cognition, emotions, behaviours, and physical health.
In this blog, we will think about some general advice about sleep, and why it is so important for parents to consider their own self-care and be compassionate to the difficulties they are facing.
For Parents: Sleep and Self Care
Not only do young people suffer when sleep deprived, but parents also find this difficult. With children not sleeping, it is natural for parents to become sleep deprived too, and just like with children, you might notice differences in your ability to think, concentrate, regulate your emotions, manage your behaviour, or changes to your physical health. We also know that a lack of sleep and the consequences have a big impact on parenting. When we are sleep deprived, we can sometimes struggle to regulate our emotions and stay calm, especially in challenging situations. This may limit our ability to respond to stress or adverse events in a way that we would like or fits with our values.
Prioritising self-care: We talk a lot in psychology about the importance of self-care and compassion since we cannot “pour from an empty cup”. Remember that sleep is part of self-care. It is important that you are prioritising your own sleep, thinking about how you can improve your sleep routine whilst balancing your other commitments. We know that it will not always be easy to do this, especially when your young person is not sleeping, which is why it is important to hold compassion for yourself.
Every family is different.
We know that sometimes, people may give you advice which does not work or does not fit in your family. Therefore, it is important to remember that every child and family is different. Try to be kind to yourselves and not feel guilty for relying on one method over another, even if it looks different to those around you.
Families experiencing childhood liver disease already have a lot to balance, sometimes, we need to consider which battles are the ones to pick. It is therefore completely okay to do what suits your family in the moment. We encourage you to follow safe sleep guidance but otherwise there is no right or wrong, other than to do what suits your family’s wishes and values.
Guilt and shame are natural responses – but remember that sleep is a challenge for all families, with children of all ages. When you add in the challenge of a health condition, it is understandable that things feel difficult at times. Remember that you already have a lot on your plate, and sometimes holding some self-compassion is important.
Advice
There is lots of advice about how to improve sleep habits and get a good night’s sleep, however, with a physical health condition, things will always be a little different and sometimes more difficult. If you need to adapt advice to make it work for you, that is okay. It can be easy to be shamed for doing one thing over another, when really every person is different.
- Developing a routine
It is really important for young people and adults alike to develop good bedtime routines (sleep hygiene) including a set time to begin to relax and set times that you go to bed and wake up. Build time into your evenings to relax.
* No blue light from technology
Try to avoid looking at phones, tablets, and computers one hour before bed. Maybe instead, try reading, listening to soft music or a podcast. It also might be useful to try meditation or mindfulness.
* Worries
If you are the kind of person who has lots on their mind at bedtime, you could try writing down all your thoughts and worries before you go to sleep. Another useful exercise is the “Leaves on a stream” exercise, which is all about noticing thoughts and letting them be without engaging with them
https://youtu.be/1yQX1y7zMAg?si=w6VB5l0bNHKoW-oW
* Sleep environment
Creating a good sleep environment is vital for good rest.
Darkness is an important part of our sleep environment – keep lights off, use blackout blinds or curtains, if possible, or a sleep mask to keep things dark.
For most people it is important to keep noise to the minimum by turning off your phone and using earplugs if you need them. However, some people prefer to sleep with background noise – white noise, soundscapes (like rain sounds), or music, and that works to!
Keeping your room cool is also beneficial for sleep.
When you can’t sleep
If you really can’t sleep, get up rather than letting yourself get anxious. If you keep tossing and turning, you might notice your thoughts start to race and find it even harder to sleep. Instead, try to relax, don’t use your phone, but you can read or listen to a podcast, and then try again in about 20 minutes.
Itching
When young people are struggling with constant itching, they might struggle to sleep more so than usual. Some tips and advice include wearing loose clothes to bed, keep the environment cool, and use cold compresses on affected areas. Distraction techniques can also be useful when physical techniques are not working. Deep breathing, progressive muscle relaxation, grounding techniques, or mindfulness can be helpful.
Co-sleeping
The recommended advice for where your child should be sleeping will depend on their age and their developmental stage. Each family will decide as to what works best for them.
It is recommended that infants sleep in their own bedspace or cots, on their back. Co-sleeping is where parents/caregivers sleep with their babies, either through choice of sharing a bed or accidentally. If you choose to co-sleep, it is important to consider how to co-sleep safely. The Lullaby Trust offers lots of guidance on this: www.lullabytrust.org.uk/baby-safety/safer-sleep-information/co-sleeping.
Sleeping in Hospital
We all know that sleep in hospital is difficult, whether it be due to increased worries, noise, or the change in environment. The best advice for when you are in hospital is to keep your routines consistent as much as you can. For example, the time you wake up and go to bed. It can be helpful to consider the environment and reduce the amount of noise and light by using ear plugs and face masks. Hopefully the ward should turn off lights and ask for quiet at a certain time. You should also continue to limit access to blue light and turn your phones on silent to limit disruption.
If you’re struggling with your child’s sleeping habits, or any other aspect of their liver condition, remember that we are here for you. Contact us here Talk To Someone | Liver Support | Children’s Liver Disease Foundation
Other Services and Advice:
Sleep Guide for parents and caregivers
Cerebra.org.uk
- cambspborochildrenshealth.nhs.uk/sleep/
