One of the hardest things about having a very sick baby is that no one can tell you exactly what to expect. Your baby’s condition can change quickly and therefore the treatment options can change rapidly as well.
Making the decision to limit or stop your baby’s intensive care is devastating and very few parents feel emotionally prepared to deal with this. You may disagree with the medical staff or even your partner about it. You may feel that you are not ready to make that decision.
Take your time and talk to the nurses, doctors and other support staff around you; with their experience and knowledge in these matters, they can be invaluable at such a crucial time. All information and advice will be given with your baby’s best interests at heart. Your unit may have a counsellor on site to help you and there should also be spiritual support available, should you wish.
Getting as many facts as possible will give you more confidence that you are doing what is right for your baby. It’s important that the doctors and nurses talk openly with you so you know what’s happening and so that they recognise all of your concerns. Don’t be afraid to ask lots of questions, or the same questions over again. Keep asking until you really feel you understand the situation.
Your baby’s condition can change rapidly and you may need to respond by making decisions quickly. But wherever possible, you should have time to think, seek more advice and find support. You should never feel pressured into making a decision you don’t really agree with.
Your baby’s doctors and nurses can take some of the pressure off you by sharing in the responsibility. Making decisions together with parents is the way that doctors and nurses are expected to work, under professional guidelines and the law. They bring their knowledge and experience to these difficult decisions. At the same time, you are closest to your baby and bring your own perspective. All the information is weighed up so you can feel confident in the decisions that you all make.
You don’t have to face this alone. Talk to the people you are closest to – your partner, family and friends.