Advocating for sick or premature babies in the NICU: your role
In the neonatal intensive care unit (NICU), the goal is for you to work as a team with the hospital staff who are looking after your sick or premature baby.
The nurses and doctors have expertise in the medical and nursing side of things. And you have a special role in getting to know and advocating for your baby’s best interests.
When you advocate for your baby, they have a voice because you’re speaking for them. Here are some tips to help you speak up for your baby while keeping up a good relationship with hospital staff.
1. Get to know your sick or premature baby’s likes and dislikes
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 what you’ve noticed and any questions you have.
2. Learn about your baby’s medical conditions
Sick or premature babies can sometimes 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’s 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 baby’s medical conditions and treatments will mean for the future
You can ask your doctors or nurses about what might happen with your child’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 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?
- 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 bad side effects of this treatment? Might these side effects outweigh the good the treatment will do?
- 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 something
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 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 social workers, psychologists, lactation consultants and physiotherapists. 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 baby is in the 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.