Sleeping

Babies

If you have reached the point of wanting to establish a good sleep pattern here are some helpful ideas:

• Firstly, only start to change night disturbance when you feel ready to. Don’t let others make you feel that you should change things if you do not feel the time is right.
• Don’t stop night feeding until a child is well established on solid food and regularly gaining weight. Some dieticians and health visitors may wish to continue with night feeding for some time. Even if night-time feeding needs to continue you can still have a routine.
• Talk with your partner/anyone regularly involved with care at night, about how you are going to change the night-time routine, so that you are all supportive of the changes. Persuading children to sleep when you want them to, can be very stressful. You need to be united to succeed.
• Do you have the energy to make the change. Much as a good night’s sleep sounds like heaven you need to be fit and full of determination to succeed in establishing the change. If you lack energy or you are not well don’t start the process of change just yet.
• Work out a routine that you can follow most nights, one that can start at different times and be done in different places but which will always indicate to your child that it is bedtime.

There are lots of ideas of ways to introduce a routine.

At bedtime go upstairs and don’t bring the baby or child back down even if they wake. Bath the baby and play in and around the bath. Darken the baby’s room, nightlights and light mobiles can really appeal to children.

Introduce a story or play a story tape. Even young children like the sound of a voice calmly reading.

Do not have loud music but a moderate and even toned piece can be soothing. Give the child a milky bedtime drink quietly in their darkened room. Warm full tummies make for better sleep and it will also give you confidence that they have had food before bedtime. Remember teeth cleaning is an important way to prevent tooth decay so try to include it in the night routine. Make sure that the baby is warm. When they are very small swaddling the baby keeps them secure and comfortable. Children with only half a heart get very cold hands and feet so all in one baby grows with mittens (if they do not suck their thumb) and extra socks can be a really good idea. Some parents use baby sleeping bags.

One of the most common questions will be about leaving a baby to cry to sleep.

If the baby cries, always go to check that they are alright but unless they are ill don’t lift them out of the cot. Put them down to sleep, pat them gently on the back. Don’t encourage a conversation, avoid eye contact then leave the room.

Some people wait for a minute before returning if the children cry, others feel comfortable to leave them for five minutes. Gradually over the days, lengthen the time that you leave them. Never leave them to scream.

Children need to have confidence that they have not been abandoned but try not to reward the crying.

It can be helpful to turn on a light mobile, quietly play a story tape or the radio (quiet voices not music) as the children often settle better if there is a voice in the room.

Parents ask if it is safe to leave a child with a heart problem to cry. Many doctors will advise parents that a short period of crying will not do any harm but if you are worried about your own child’s needs ask your doctor or the specialist cardiac nurse and they will advise you as to what is safe for your child.

Try to keep calm through the night-time process. It may be difficult to start with but it will get better if you stick with the routine.

Once the children no longer need milk during the night only offer them water if they wake, they may need the fluid. Milk is food and often when the night feed is dropped the children feed better in the day. Many mothers who breastfeed have a difficult time with requests for milk as it is always around. If you feel that you are ready to drop a night feed then ask your partner (if applicable) to go to the baby in the night until the routine is established.

Although the use of a dummy or sucking the fingers is frowned upon by some parents the comfort a baby gets from sucking themselves to sleep can be a useful tool in establishing a pattern for sleep. Children with the need for repeated surgery in their early years may get added comfort from this sort of sucking if they have periods without breast or bottle feeding.

Once you have decided on the routine of your choice stick to it for at least two weeks. It can take a great deal of energy so only start it if you all feel fit and well. If you are worried about what the neighbours think about a few nights of crying just explain to them what you are trying to do.

Children

If you have established a night-time routine when your children are small it can help greatly as the children grow up but don’t think that your child’s sleep patterns will stay the same. Children change, grow up and challenge routine all the time.

Be ready to re-establish the routine you set when your child was small with added planning around introducing a story or playing a story tape. Even young children like the sound of a voice calmly reading. Do not have loud music but a moderate and even toned piece can be soothing.

Negotiation. All children like to push boundaries especially about bedtime. There will be a programme that they want to watch or a game they want to play. Treats are always a good thing and so negotiation can be a helpful way of finding a balance to allow the odd evening when bedtime is a little later with the promise that it only happens as a treat.

Things that may interrupt a night-time routine

Leg pains

Many children with half a working heart experience poor circulation through their legs during the night. This leads to cramp like pains that really can be very distressing for a child. Keeping legs warm at night can help but giving a dose of Paracetamol and giving the legs a good massage can help relieve the pain.

Nightmares or night terrors

There is evidence to say that children start to have nightmares at about the age of one. It is of course difficult for them to articulate that the sudden waking and crying out are because of a dream but brain movement and actions in sleep prove that they do dream. From about the age of two the children are able to articulate the dream a little more. As imagination develops so do dreams and children. Soothing reassurance and calm bedtimes can help. Over tiredness can result in nightmares so planned sleep when tired can avoid the trauma. Helping children to articulate any fears they have experienced and answering questions about worries can help to solve issues that might give them worries that they take to bed.

Hospital stays

Children with a single ventricle heart often have to stay in hospital. Either for tests or surgery. Their sleep pattern will be interrupted by the need for them to follow the planned routine of the hospital. Once they have fully recovered from any tests or operations and have gone home it is important to re-establish the routine that they understand. It will help them feel confident about their recovery and that life will return to normal. It is very often the case that children who have had a lengthy stay in hospital regress their childhood behaviour a little for a short time. Their night-time routine will help them regain their energy through adequate sleep and gradually they will return to being at the developmental level that they were before surgery.

Bedwetting (Enuresis)

Children often have accidents and wet the bed, especially if they are on diuretics or if they have had a period of time in hospital. It is very important to help a child gain confidence to gain a dry night’s sleep. If you have any long-term concerns about a child wetting the bed it is important to talk to your medical team. There are lots of tips and treatment plans that can be put in place to help your child.

Holidays

Often holidays require a change in bedtime but of course sleep for a child with a heart condition is just as important, if not more so, when they are away from home because the routine and exercise in each holiday day usually asks for more energy than normal.

Teenagers

Getting a good night’s sleep is just, if not more important, for teenagers and young adults as it is for children. During a sound night’s sleep teenagers replenish the stores of oxygen and energy in the cells of their body. This is most effectively done when their bodies are at rest, especially during sleep because the body is using less energy at that time so there is more opportunity to store unused oxygen and the energy from food in every part of their body.

Balancing energy levels and a frenetic teenage lifestyle is difficult for most young people with half a working heart. A lack of sleep makes their lack of energy more pronounced. Here we look at tips for helping make sure that getting to sleep is easier and that the sleep they get is most effective.

Young people aged 11 to 18 need between 8.5 and 10 hours sleep a night. Some need more because there is a great deal of growing going on through puberty.

Not getting enough sleep or having sleep difficulties can

• Limit your ability to learn, listen, concentrate and solve problems. You may even forget important information like names and numbers. You might even miss an important date.
• Lead to aggressive or inappropriate behaviour such as yelling at your friends or being impatient with your teachers or family.
• Cause you to eat too much or eat unhealthy foods like sweets and fried foods that lead to weight gain. This may not be a problem if you have half a working heart but a healthy balanced diet is better for everyone.
• Heighten the effects of alcohol and possibly increase use of caffeine and nicotine.
• Contribute to illness, when you are tired you become run down and therefore more prone to picking up infections.
• Make you more prone to pimples. Lack of sleep can contribute to acne and other skin problems.

Things you can do to help

• Discuss any worries about your heart condition with friends, family, your doctor, specialist nurse or LHM youth team.
• Discuss school worries with friends, family, teachers or the LHM youth team. Explore school workloads. Negotiate change to timetables, homework and short and long-term expectations.
• Seek out support with bullying or friend or peer pressure. Talk to your parents or school leaders. You should never feel scared or pressured by your friends.
• Talk to your best friends about relationships but always seek support from adults that you trust if you need further help.
• Plan your day and your week to find a balance between school, fun and sleep.
• Make sure you keep warm in bed. Covered hot water bottles, onesies, bed socks.
• Never ignore signs that you are too tired, take action to plan in a day of rest. Never ignore medical signs like increased heart rates or irregular beats. Talk to your cardiologist or specialist nurse.
• Don’t drink too many caffeine-filled drinks they overstimulate and stress your heart so they should be avoided.
• Non-prescription drugs and smoking all overstimulate and stress your heart so they should be avoided.
• Alcohol should be enjoyed, once you are over 18, if your doctor says it is safe and within moderation.
• Tell doctors if you get leg pains. Massage your legs and take Paracetamol.
• Don’t play computer games, watch TV or use your mobile phone close to bedtime. They can overstimulate your brain and delay your sleep.
• Ask your doctor about what exercise is safe for you. Build time into your week for gentle safe exercise.

If you are worried about the amount of sleep you are getting, falling asleep or a constant feeling of tiredness seek help either from your GP, your cardiac doctor or specialist nurse.

Guide to how much sleep children should be getting at different ages