Advocating for Your Child

Having a baby is overwhelming enough, but when your world gets turned upside down because of a NICU admission; you, as a parent, may feel lost and helpless. Rather than sink into a place of passivity and giving over all authority to the hospital, we encourage you to see yourself as having a critical role in your baby’s hospitalization. Your baby will have an excellent doctor, caring nurses, respiratory therapists, physical therapists and more, but the one job nobody else in the hospital can do better than you is being your baby’s advocate.

When a baby is born and has to spend time in the NICU, parents are removed from their role of primary decision makers. They are no longer expected or allowed to be the care givers or the ones who figure out what their baby wants and needs. That role gets squarely taken over by the NICU staff, and it leaves parents feeling overwhelmed, insignificant, secondary, passive.

There is obviously a very good reason for this. The NICU staff is highly trained and generally very competent. They have done this many times before and they do save lives. Unfortunately, one of the by-products of the loss of the role of caretaker is damaging the family bond, the parent-baby connection. Often parents are helpless in controlling how the foundation of their family starts, and it’s heartbreaking.

However it is imperative that parents remember their value and appreciate their unique and undeniably important place in this baby’s life. As such, there is an integral role for them to play in the NICU. The way the parents become caretakers while their child is in the NICU is by advocating for their child.

An advocate is “one that supports or promotes the interests of another,” according to Merriam-Webster.

It means looking out for someone, helping protect the interests of someone who can’t fight for themselves. It will mean learning about your baby, and speaking up for him or her. You will not be the NICU expert, but you will be your baby’s expert. Taking on this additional role has two tangible benefits:

  1. This gives you power. In this nightmare that is the NICU, you have very little power.  You still will have the NICU team responsible for your baby’s health and well being (and that’s a good thing!), but by taking on the role of baby advocate, you also have responsibility, you have direction, purpose, and with the knowledge you gain, you will have genuine authority and power as baby’s advocate.
  2. It gives your baby a voice.  It means your baby has not only parents, who love and nurture him, but also someone to speak up for him.  As an advocate, you’ll speak up for what your baby needs, you’ll ask questions of many people in order to gain knowledge about what possibilities exist for your baby.

How to become an effective NICU baby advocate in a nutshell:

  • Educate yourself
  • Educate the staff about your hopes and dreams
  • Establish effective communication with staff
  • Speak up!

First, you officially accept your role. Nobody is going to give you a fancy business card or an official badge to wear, but in your mind, once you take on this job, you’ve taken the first step. You now see yourself has having an important place in the NICU, even if nothing has officially changed.

Next, start asking questions, lots of them. Be respectful of the staff, and if they are clearly busy and otherwise unavailable, don’t start in with your million & one questions, because you’ll be seen as a source of frustration rather than an appreciated team member. But ask every time that you can. Make it clear you are interested in getting education and becoming informed.