Advocating for sick or premature babies in the NICU: your role
In the neonatal intensive care unit (NICU), the goal is for you and the hospital staff who are looking after your sick or premature baby to work as a team.
The nurses and doctors have expertise in the medical and nursing side of things. And you have a special role in speaking up for your baby’s best interests.
Here are tips to help you speak up for your baby.
1. Get to know your sick or premature baby’s needs
You might not be a medical expert, but you can get to know your sick or premature baby very well and think about what they need. It helps to make notes for your baby’s team about things you’ve noticed and any questions you have.
2. Learn about your sick or premature baby’s medical conditions
Sick or premature babies might have many ups and downs as they get healthier and stronger. If you learn about your baby’s medical conditions, the technology that supports them, and the NICU nursing and medical routines, you’ll also know 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 language you can understand. 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 sick or premature baby’s conditions and treatments mean for the future
You can ask your doctors or nurses about what might happen with your baby’s development in the future. You can also ask about whether certain treatments are likely to have bad side effects. Or if you know your baby is going to be born early or have health problems, you can ask the hospital staff what’s likely to happen and talk to them about treatment options before your baby is born.
It’s OK to say that you want the staff to be open and honest. And 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.
Doctors and nurses will do their best to talk about what might happen, but they can’t always be sure about the future.
5. Ask to be involved in decisions about complex medical treatments
Here are things to ask about:
- Can health professionals give you more details about your baby’s treatment?
- Do health professionals have different opinions about this treatment?
- What good will the treatment do? What are the risks? Are there things health professionals don’t know about how the treatment will affect your baby?
- Are there any bad side effects of the treatment? Might these side effects outweigh the good the treatment will do?
- Are there any alternatives to this treatment?
- What are the options for managing your baby’s pain?
6. Speak up if something doesn’t seem right or you’re unsure about something
It’s OK to ask the staff why they’re doing something. For example, if you think that the neonatal intensive care unit (NICU) seems too bright, you can ask the staff about why it’s like that and whether they can dim 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 other hospital professionals
The NICU team caring for your sick or premature baby will call in other professionals when they’re needed. These might include lactation consultants, occupational therapists, physiotherapists, psychologists, speech pathologists and social workers. You can ask for help and advice from these professionals when you need it too – for example, if you’re having difficulty expressing milk.
8. Expect respect and inclusivity – and speak up if you don’t get it
When your sick or premature baby is in the neonatal intensive care unit (NICU), you can expect that staff will do their best to treat you with respect and make you feel included. This includes respect for:
- your family’s religious and cultural background, values, beliefs and languages
- your family’s parenting arrangements, whether you’re raising children as a blended family, co-parenting family, single-parent family, LGBTIQ+ family and so on
- gender diversity in your family, including respect for your gender and pronouns
- your family’s choices, like where you live or what clothes you wear
- your family’s circumstances – for example, parenting with intellectual disability or parenting as a teenager.
If you don’t feel respected or included, it’s OK to raise this with the nurse, social worker, doctor or NICU coordinator.