"as his mother I have to make the decision for him and what's best for him"
When we are making decisions about treatment for a child our first priority should be doing what is best for them. Sometimes this means we have to separate out what we want, from what they would want, or what would be best overall for them.
For an adult, medical decisions are usually based on what the patient wants. We can ask them whether they would like treatment. If they are very sick or infirm they may not be able to tell us, but often we have a pretty good idea what they would have wanted.
For children we can't make decisions that way. Very young children can't tell us what they want. Older children may be able to tell us their views, but they sometimes don't understand the risks and benefits of medical treatment. So, parents and doctors usually try to work out what would be best for the child and decide on their behalf. This is sometimes called acting in the child's 'best interests'.
One thing that makes it hard is that parents in this situation may feel torn between different needs and desires. It is often incredibly hard to figure out what the best thing to do, because strong emotions of love may make us want to believe that the child will get better even when they can't.
"so I could clearly see then, that it was no longer for him. And I think that was our line in the sand - if we were doing it for us rather than for him."
There are different ways of trying to work out what would be best for a child.
One way is to imagine ourselves in their situation and try to work out what we would choose.
Another way is to try to weigh up the pros and cons of different choices.
Both can be difficult.
It can be very hard to work out what would be best for a child. We might ask ourselves, 'what would the child say, if he or she could talk right now?'
Sometimes it helps to try to imagine what we would choose for ourselves if we were in the child's situation. Would we want life support to continue, or would we want doctors to focus on our comfort instead?
Imagining such a choice isn't always easy, particularly if we are thinking about children who have been born with serious health problems. For example, it is pretty hard for someone able to move normally to imagine what it would be like to be paralysed. What treatment would we want if that happened to us? It is even harder to imagine what it would be like never to have been able to move. If adults are making decisions for a baby, should they think of themselves deciding as babies or as adults?
It can help sometimes to speak to other parents who have been in the same situation or to people who have faced similar health problems. It is important to remember, though, that the choices they made may not be right for your child.
Another way of working out what would be best is to try to weigh up the advantages and disadvantages. For example, some people find it helpful to write a list of the positives and negatives with continuing life support treatment, or with stopping life support. You could talk these through with the doctors and nurses, or with a social worker or counsellor. When we think carefully in this way, sometimes it becomes clear that life support treatment is doing more harm than good, or alternatively that it is worth giving it a go.
Again though, it isn't easy to work out what to put on the list. Some things may be more important than others. Different families will place more or less emphasis on different things. Families or doctors may reach different answers about whether life support treatment is best for a child. These decisions are very complicated, and reasonable people have different views. There may not be a right and wrong answer.
If you are in that situation, ask your child's doctor why they have reached their view. If you can, explain to the doctor how you reached yours. That may help you both understand why you reached a different answer.
You can ask your doctor for help in working out what would be best to do for your child (See Who decides).
"we were like you know we'll give her a chance and that's our mentality"
"I had decided it was going to be quality over quantity. That a good life didn't necessarily have to be a long one"
Children can sometimes provide very important information about their experience, and what it has been like for them to be in hospital and receive medical treatment. That experience can be very important in working out what would be best.
Every child is different, and you are likely to know them best. Some children are too young to understand about what is happening. Others may have only been sick for a short period. Still others have a long experience of being sick over their lifetime. Their views about their illness are important.
Speak to your doctor if you are unsure how to talk to your child about their illness. You can also find support and information for talking to children about life-limiting illnesses in Further information, Links, Bibliography
Older children may be able to communicate their wishes about life support treatment. It is important to listen to them, and where possible to include children in discussions with doctors about treatment.
Some children may have very clear views about what they want and do not want. This is especially common in children who have a long experience of illness and medical treatment. It is important to talk to older children about what is happening, and to give them a chance to express their views. A child's views about treatment can be an important help in working out what would be in their best interests.
However, it is also important to try to talk with a child about why they have particular views. For example, a child may be afraid of treatment because they worry that they will be in pain, or will be separated from their family. Or, a child may be afraid of stopping treatment because they worry that they will be abandoned, in pain, or that they will be separated from their family. Talking through and addressing these fears can be very important in caring for the child. It may lead your child to come to a different view about treatment.
Your child's doctors and nurses may be able to help you talk with your child about treatment options. In some situations a psychologist or other counsellor may be helpful to talk with the child about their thoughts, feelings and wishes.