Advocating for  premature babies in the NICU

In the NICU, the goal is for you to work together with the medical staff as a team looking after your baby. The nurses and doctors have expertise in the medical side of things. You have a special role in getting to know and advocating for your premature baby’s best interests.

When you advocate for your baby, she has a voice because you’re speaking for her. Here are some tips to help you speak up for your premature baby while keeping up a good relationship with the medical staff.

How to advocate for your premature baby: tips

1. Get to know what your baby likes and doesn’t like
You might not be a medical expert, but you can get to know your baby very well and think about what he needs. It’s helpful to make notes for your baby’s team about what you’ve noticed and any questions you have.

2. Learn about your baby’s medical conditions
Premature babies can sometimes have lots of ups and downs as they get healthier and stronger. If you learn more about your baby’s medical conditions, the technology that supports her, and the NICU’s nursing and medical routines, you’ll also know better when to speak up. It’s a good idea to write notes so you can keep track of what’s happening each day.

3. Ask for explanations you can understand
It’s OK to ask your doctor or nurse to use everyday language. For example, you can say things like, ‘I don’t know what retinopathy of prematurity means. Can you explain that in simple language, please? What does it mean for my baby now and in the future?’

4. Ask what your baby’s medical conditions and treatments will mean for the future
For example, you can ask your doctors or nurses about what might happen with your child’s development in the future. It’s OK to say that you want the staff to be open and honest. You can also ask about whether certain treatments are likely to have bad side effects. It’s a good idea to make regular times to meet with your baby’s doctor or nurse, even if this needs to be by phone.

If you know your baby is going to be born early, you can ask the hospital staff what’s likely to happen and talk to them about treatment options before your baby is born.

5. Ask to be involved in decisions about complex medical treatments
Here are some questions you can ask about treatments:

  • Can you explain the treatment my baby is getting in more detail, please?
  • Do professionals have different opinions about this treatment?
  • Are there any bad side effects of this treatment? Might these side effects outweigh the good the treatment will do?
  • What good will this treatment do? What are the risks? Are there things you don’t know about how this treatment will affect my baby?
  • Are there any alternatives to this treatment?
  • How do you manage my baby’s pain?

6. Speak up if something doesn’t seem right or you’re unsure about anything
Ask the staff about why they’re doing something. For example, if you think that the NICU seems too bright, you can ask the staff about  why it’s like that and about dimming the light. But it’s always best if you’re respectful and polite. For example, ‘I’m a bit worried about how bright it is. Is there a reason for that just now?’

7. Take advantage of hospital experts
Your baby’s care team will call in experts like social workers, psychologists, lactation consultants and physiotherapists when they’re needed. But you can ask for help and advice from these experts when you need it as well – for example, if you’re having difficulty expressing milk.

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