How to Advocate for your Baby in the NICU
Updated: Dec 3, 2021
One of the most amazing families I know and did a phenomenal job of navigating the stresses and chaos of the NICU, even after some traumatic birthing experiences. I wrote this blog with them in mind as I work with families everyday, some who encounter the NICU, as many of our Black babies are at risk due to institutional racism and it's many repercussions on our health and well being. I try to channel and embody this mom and her strength anytime I work with a family dealing with the NICU. I know you can get through it just as they did, keep calm, cry when needed and stay focused on your baby and your recovery. One day at a time is the motto.
Me with Baby Girl "I" for a lactation consult - Mom and baby breastfeeding well - In NICU
Be the leader of your baby’s stay
With so many doctors and nurses running around, it can seem intimidating or overwhelming for you to get involved with the normal day to day life of having a baby like feeding, diapering, soothing, sleeping and bathing. Don’t be afraid to step in at any time and take the lead when you are ready. Izzy's parents definitely did a great job of it and getting her home!
Ask for the tools you need to provide a stable and relaxing connection with your baby. This can look like telling them you will be doing all the basic routine tasks your baby needs and will only need their help if you ask or baby requires it. Ask them to show you how to do things like take a temperature or administer medications that they will need to stay on at home so that you feel more comfortable doing it at home alone.
A few clients of mine told me that you really have to use your voice for your baby and be there as much as you can to do those simple tasks that the NICU often “takes over“ and you might have to fight for it and they might make you feel unwelcome but it’s your baby and you call the shots, they have to deal with it.
Speak up about staff
If you have any sort of problem with a nurse, your best bet is to speak with them honestly and respectfully.
Sometimes they need a gentle reminder or you might have to go to the next level – either because it feels intimidating to complain directly to the nurse or because the problem isn't getting fixed. Then it's time to go to the nurse's supervisor or the NICU director.
Many parents don't realize you can also request that a particular nurse not care for your baby, if you disagree with their techniques. Put in a request like this with the supervising nurse or your primary pediatrician.
Baby Girl "I" a few months after NICU
You are the expert of your baby
NICU nurses and doctors admit that parents often notice before they do that their child doesn’t seem ok. You're the best person to know your baby's preferences. Make a list for nurses of what your baby prefers and put it on their bedside similarly to a birth plan.
You have rights to know every single thing about your baby’s medical information and sometimes staff will withhold that information from you for different reasons not always bad ones. However; there are ways you can address information you feel you are not receiving or not receiving fully.
I would like to sit down with you and go over from top to bottom what my baby‘s current situation is and how it relates to their health and well-being. Ask away, there is no question that is inappropriate to ask.
Keep a running list of your questions when they occur to you on your phone so whether it's in the middle of the night or when a relative asks something you can't answer. Social workers are often around the NICU for your family and they can help facilitate meetings with your medical team.
Baby Girl "I" breastfeeding with success after a stay in the NICU. So proud of this family!
Do get a second or third opinion
If you have concerns about any aspect of your baby's health treatment, whether it’s small or big you shouldn't hesitate to get another opinion and this is in no way to devalue your doctor but rather to get a different perspective to gather info you need to make an informed decision for your baby.
Sometimes a good response until you get it is, to say “let’s see what my baby can do on their own and we will go from there.”
Request a better room/bed
You can request for your baby to be in a different room if yours seems unreasonably crowded or chaotic. For example, if there's a large family that always has several members visiting, it may make it hard for you to breastfeed or for your baby to rest. If your baby has jaundice, you can ask for a spot by a window – sunlight helps with the jaundice.
Some NICUs also have rooms where parents can stay the night if they like. Ask your social worker to find out how to get one of these rooms – you may get preference if you live far away or if your baby is needing long term care.
Me with Baby Girl "I" and Mom C. Chat with the experts
Sometimes good social workers can help you with financial aspects of being in the NICU.
IBCLC’s still visit the NICU, ask for one if there isn’t one around. Lactation support for premature babies is often limited. Lactation consultant can help get baby to breast when ready, encourage supply and educate you on pumping and going home with baby feeding tips.
Ask whose in charge and write down names. It never hurts to have too much information but it does to not have enough.
Now go and be a fierce advocate for your baby!
Thanks to my client for choosing to share her life, babies and world with me! I adore this family and I'm so excited for their continued journey as a family unit. We've been working together for years now through many perinatal challenges, losses and setbacks but we overcame them and have since seen the most beautiful growth for them as a family. One day, perhaps she will choose to share her story with us. It's quite profound and everyone needs to hear it so that they can fully understand the Black Maternal Health Crisis and the factors that contribute to maternal and infant mortality and morbidity rates being 3-4x higher than white women. Want to learn more visit Kira 4 Moms to learn more about the crisis plaguing America and Black families.