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Being your baby's advocate

Articles

Being your baby's advocate

Trish

NICU mom holding NICU baby

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, I would encourage you to see yourself as having a critical role in your baby's hospitalization. Your baby may 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.

NICU baby intubated IV holding mothers finger

Parents prepare for parenthood in many ways - decorating a nursery, deciding on baby names, buying strollers and diapers and mobiles, reading baby books. Parents, who do not yet know their baby, are nonetheless trying to anticipate what they will need to do and what their baby will need from them. When a healthy term baby is born and sent home to parents, those parents may not know their baby yet but they get the opportunity to learn and grow together, make mistakes and seek advice as they see fit, in a manner that fits their parenting approaches.  They get total responsibility for this new life, and as hard as that might be, it is the beginning of parenting.

Nobody prepares for the NICU. And when a baby is born and has to go to the NICU, those parents who have been planning and preparing so hard 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.

Now, I'm a NICU nurse, so I am one of the ones responsible for this takeover, and I wouldn't do it if I didn't believe wholeheartedly that certain babies clearly need the care of a NICU.  We do save lives, and play a vital role in keeping many babies healthy and alive.  But I don't like the role I play in damaging the family bond, the parent-baby connection. I see parents helpless to control how the foundation of their family starts, and it's heartbreaking.

I try early on to help parents remember their value and appreciate their unique and undeniably important role in this baby's life. One of the more effective way to empower parents is to give them a job, give them a role on the team, give them permission to be a part of this group of people providing care for their baby. Aside from being parents, I encourage parents to take on the role of being the baby's advocate.

Preemie snuggling with NICU dad

I'm not suggesting that you will give up your role as a parent when you become an advocate, I still want you to be your baby's mom or dad, love her, snuggle and talk and sing and coo to her. Be the parent, love on your baby. But in order to deal with the feelings of not belonging on the team of people caring for your baby, NICU parents need to be invited to be a part of the team as an advocate. So when you're not snuggling and cooing and singing, you can be doing other work that will help your baby immeasurably, include asking questions, speaking with doctors and nurses, doing research, and more.

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 your baby, and speaking up for 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. If nobody else ever invites you to take on this job, consider yourself officially invited by me!

Next, you 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.

(I will warn you that I've seen too many occasions when parents take on this role with a bit too much gusto, and it can backfire.  You are new at this role, and unless you are a NICU staff person, you do not yet actually know how things work and what's going on.  So start slowly by asking, learning, gaining the cooperation and trust of the staff. If you want this to go well, be a helpful new team member, by not barging in and being bossy and demanding, because I assure that does not go well for you or your baby. Start by acknowledging how much you have to learn, and then start learning.)

NICU mom and NICU dad snuggling with preemie

Do not hesitate to start sharing your story. As much as you don't know how a NICU works, you do know very well what you want for your baby, what your hopes and dreams are, what things you long for, and the NICU staff does not know this until you share it with us.  So when you're talking with staff, asking questions and learning about the NICU, also be sure to tell them about your parenting ideas.  Begin to teach them about how you envision your family, because there are millions of parents out there, and unless we know what you want, we will default to pretty generic, standard ways of doing things that may not match your dreams. 

For example, maybe you hoped to wear baby in a sling all the time and breastfeed exclusively, without bottles.  But when your baby was whisked off to the NICU, perhaps she needed formula to correct a dangerously low blood sugar.  Rather than just give up and forget your dreams, still communicate with the staff what you had hoped for.  You might not know if you'll ever get to go back to that dream, because your baby's health and safety are most important, but sharing this information with the staff allows them to now know how they might approach upcoming plans to better respect your wishes.  If you never say a word, they may assume you're fine with bottles and next thing you know it's all your baby ever gets, and you feel like all your dreams are dashed by the NICU experience.

Next, find out if you can attend rounds (when the staff gather to discuss their patients, deciding plans and treatments.)  Many units exclude families from rounds, primarily to protect patient privacy  (if parents are all in the unit when the staff are discussing each patient's case, all those parents would hear legally protected private information). But some units have figured out ways to abide by privacy laws and still allow parents during rounds.  If so, you should be there as much as you can, because it's your best way to know what the plans are and it's your best opportunity to speak up with concerns and observations. And if you can't be present for rounds, talk with the doctors and nurses and request frequent communication with them.  If you can't meet them face to face daily, maybe you would like to request phone calls daily or every other day? Whatever seems like good communication to you. The staff may be busy, and they may forget to check in with you regularly. If you were to remain a  passive & helpless parent you might just accept that begrudgingly. But now, in your new role as your baby's advocate, it is your job to ask for the kind of communication you need.

An advocate will also take on the following tasks:

  • Speak to the director if a particular staff person is not caring for your baby in a manner that you feel is safe or beneficial for your baby.  I wish there weren't nurses who make parents uncomfortable, but nurses & parents are human so there are always potential clashes.  I highly recommend trying very hard to be patient with nurses you don't adore, because even if personalities clash, those same nurses still may provide excellent care and may in fact have many things to teach you that you wouldn't otherwise learn by being surrounded by only staff you like.  However, if you truly find someone too difficult to work with, your role as advocate requires that you speak up for your baby and request a change. Remember, as her advocate you are her voice, and if you believe she needs a change, it's your job to speak for her.
  • Talk with other families, with social workers and support groups. And when you hear about treatments you think might be good for your baby, when you learn about new research or alternative approaches you think might be worthwhile, you speak up to the nurses or the doctors.
  • Research your baby's condition. There are many resources available online, including this list of some specific medical issues, and once you start reading more, you'll be better educated and you'll know what to expect, what to ask for.
  • Research what other NICU's are doing.  You may discover that there are treatments you never knew about because your unit does not practice them, but once you learn about them you can ask about them at your facility. Maybe you'll meet resistance, but maybe you'll teach your NICU something new and wonderful! (For example, most units now offer kangaroo care, but if you never heard of it, you might be missing out on something really important and beneficial. Teach your unit if you learn of something new)
Mother, father and baby in black and white

I hope this gives you a good general idea about what it means to become a great advocate for your baby. I'm not going to say it will always be easy - some hospital staff have a very hard time giving up any control, some have a hard time with parents to come across as adversarial, some have a hard time feeling that their families are trying to tell them how to do their jobs rather than obediently following everything the staff says. 

Be patient, sweet NICU family, this truly is a difficult time.  And persevere - you are the parent, you do have the right and responsibility to advocate for your baby. You have to defer to the staff about so much during this time, because they have the medical and nursing knowledge needed to keep your baby healthy.  Nurses are patient advocates, and I'd argue we do an incredibly good job most of the time, but there is no way we will ever have the strength of love and connection that you do. And we will never be there 7 days a week, worrying about your baby 24 hours a day, as you will. So you are the best possible person to advocate for your baby.

Do you have a good experience to share about how you advocated for your baby? Sharing your insights will help other parents with their journey! Thanks!