NICU Names: Guilt, Anger, Sorrow

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Categories Anger, Emotion, Fear, Frustration, Grief, Guilt, Mommy Issues, NICU, Parenting, Prematurity, Theme WeekTags , , , ,

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Aside from the times I truly feared for the health, happiness, and life of my babies, one particular thing stand out when I think back on how very emotional the NICU can be: my children’s names.

My husband and I had given so much thought to their names. We’d discovered they were both boys when I was 18 weeks along, and had full names picked out for them by before I was 20 weeks. We always referred to them by name from then on, never as Baby A or Baby B. We chose names that were very different but harmonized well. It was important for us that their names not reflect their status as twins: we very much wanted them to feel like they had individual worth from before they were born. (This is a personal thing, I know, and I am not disparaging how others name their multiples; I am simply stating how things were for us.) Even before they were born, we felt that they (particularly our Mr. A) fit perfectly with their names.

One other thing of note: I kept my maiden name. We discussed what to do with the boys’ surname—mine, his, hyphenate, combine, make up an entirely new one—and eventually decided to give them my husband’s last name. We both like the name, and as my husband is both adopted and an only son, we thought it might matter to their paternal grandparents.

When they were born, the boys were on record as MyLastName,MyFirstNameBBA (for Baby Boy A) and MyLastName,MyFirstName,BBB. And they kept those names. And kept and kept and kept those names. The nurses made nametags with their given names and placed them on their warmers, but everything else was MyLastName,MyFirstName,BBA/B.

namesThe names on their ankle bands. The names on my wrist bands. The names we had to give when calling to ask for updates. The names we had to state at the intercom to be admitted to the NICU. The names we had to sign in under to visit them. The names on the whiteboard. The names on the labels I stuck to each bottle of expressed breast milk. The names on the records—with a huge red NAME ALERT marked, to remind doctors and nurses that there was another patient with an extremely similar name, and so meds and procedures must be very carefully checked to ensure that they had the correct patient. The names printed out on the instructions and med dosages for Code Blues taped on their warmers. The names the doctors used at rounds.

I hated it. I cannot even begin to describe the feelings of anger, sorrow, and helplessness I felt about their NICU names. Not a single part of those names were actually my sons’ names. At heart, I felt like I was not their mother; that they had been stolen from me and renamed what the hospital thought was best. I knew my boys needed to be in the NICU, and I accepted that. But it was hard, so very hard, to not feel like their mommy. I didn’t change their first diapers or put on their first outfits (which came later). I wasn’t the one who decided what and when and how much to feed them. I couldn’t even hold them without permission (although that quickly ceased to be the case with Mr. D). And they didn’t get their real names, their true names, the names we had loved and loved them with, until they came home. Even when Mr. A was transferred from his birth hospital to the children’s hospital, he was admitted as MyLastName,MyFirstName,BBA. I raged and pleaded, but “nothing could be done”. A simple matter of hospital protocol meant that my sons had been robbed of their identity.

I realize this is not rational. I even realized it at the time, despite being overwhelmed with postpartum hormone shifts and scary diagnoses and not being able to watch my sons breathe as I fell asleep. I think I channeled most of my grief at the whole situation onto the issue of their names. But recognizing this intellectually is not at all the same as feeling it emotionally. And emotionally, I felt like their names had been stolen from me, along with all those precious newborn moments I missed, shared with strangers, or experienced in a setting that made the whole thing feel incongruous. My babies were simply not my own: they were shared with a very large staff of doctors, techs, and nurses (some of whom I never met or only briefly met) and all the love in the world could not change that. And their names reflected that. It hurt, and even now, a year and a half later, I am not “over” it. I don’t think I ever will be. I don’t see how one ever could be.

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Marissa

Marissa is mom to fraternal twin boys, born in January 2012. While one of them has special needs and the other does not, they are both pretty amazing. Marissa majored in linguistics, served in the Peace Corps, worked with autistic children, and was half-way through nursing school before being put on bed-rest during her pregnancy. While she hopes to someday finish nursing school, it seems like she couldn’t have asked for a better background when fate handed her two awesome boys.

4 thoughts on “NICU Names: Guilt, Anger, Sorrow”

  1. Our twin sons, born at 34 weeks, were only in the intermediate level nursery to “feed and grow,” but it was the same deal there: they were known as “Twin Boy MyLastName A” and “Twin Boy MyLastName B” throughout their stays. I know it bothered my husband that his name appeared nowhere on their “official” names while they were patients.

  2. I can only imagine how demoralizing that must have felt.

    I was just having this conversation with one of my closest friends, who is a healthcare professional. I know that some of the things that doctors and nurses do, they don’t realize the impact it has on a patient’s / family’s psyche. My guess is that this is one of those instances in which protocol is written without thinking about the impact on the family…

  3. Wow. For someone who has never experienced the NICU…that just never occurred to me! I am a “name person” too…names are a very big deal around here! Obviously I did not have the same experience…but, I think I can relate to a tiny bit of the loss and grief in this situation. I was “the foster mom” for both of mine…I was not there when they were born and I did not get to comfort them. They do not have “happy birth stories”. And, I could not give them a name until they were a year old and we were adopting them. My mommy’s heart *screamed* that they were my babies in every way…but, I was literally reminded daily that I was not their mother(yet). And, that I had no say in anything but their most basic care. Not immunizations, not environment(during visits with birth parents) nothing. It was incredibly demoralizing. I felt like everyone else just saw our family as glorified babysitters. Anyway…not the same thing…but, I think it brings about the same loss. It isn’t even close to the way you think you will meet your children and spend their first days of life. I SO hear you. I can see why you would not be over it! How do you get over something like that? You don’t. You get through it. That’s the best anyone can ask of you. Thank you for sharing…

  4. At some point in the first weeks, one baby’s name was changed to his real one, while the other got my last name, not his own. Then I had to navigate the healthcare system with twin boys with different last names! Infuriating, it angered me to no end….

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