(Neonatal Jacoplane/Wikimedia Commons | CC BY-SA)

Premature Birth and the Right to Grieve

There are quite a few ways to experience loss of pregnancy. When I was expecting my own daughter, no woman ever warned me about what could go wrong during pregnancy and delivery. I was told to be wary of sharing the news of pregnancy until the end of the first trimester, but also that I was “young, with nothing to worry about.” Only three short months before I had my daughter, my cousin delivered a full term stillbirth. Unaware that loss was even possible so late into her pregnancy, she was obviously devastated to lose her son who she knew only from carrying him inside her. Family members tried to hide her loss from me because no one wanted to show me that loss was not only unpredictable, but possible.

What about the babies born significantly before their due dates, when their bodies aren’t ready to be born or even to sustain life itself? What happens then? What happens to their parents?

Few people fathom the idea that premature birth will become a part of their reality. However, in the United States, 1 in 9 babies are born prior to the 37th week of pregnancy.1 In October 2013, The American College of Obstetricians and Gynecologists redefined “full term” to be 39 weeks and 0 days gestation, and “early term” to be 37 weeks.

Babies born before reaching full term are at an increased risk for developmental delays and even death. Yes, even at 37 weeks, past what many believe is the danger point, babies are at risk for complications. One of the most common problems for premature babies is Hyaline Membrane Disease, also referred to as respiratory distress syndrome (RDS). Symptoms of RDS appear at birth, including difficulty breathing, shallow and rapid breath, or even long pauses between breaths. The lack of oxygen to the body caused by irregular and difficult breathing can create other issues for the baby, including (but not limited to) sepsis and kidney failure. In August 1963, President John F. Kennedy’s son, Patrick Bouvier Kennedy, died of Hyaline Membrane Disease when he was born five and a half weeks early (34.5 weeks gestation). Premature infants who don’t die from this condition are often left with chronic lung issues.

"Lab group at McGill University, Montreal, Canada," 1972. (Center for the History of Medicine: OnView)
“Lab group at McGill University, Montreal, Canada,” 1972. (Center for the History of Medicine: OnView)

Hyaline Membrane Disease killed many, many, babies before Dr. Mary Ellen Avery discovered the mechanism that allows lungs to retain oxygen after birth. The discovery, and then the artificial production of the chemical surfactant, decreased the amount of deaths due to Hyaline Membrane Disease. Surfactant is a naturally occurring fluid that allows the lungs to maintain proper tension to facilitate respiration. Premature infants do not naturally produce enough of this and require a synthetic surfactant treatment at birth to help breathing. While it is still a precarious situation at birth for premature infants, death is significantly less common than it was 60 years ago.

Though survival is far more common today, all babies born prior to the gestational milestone of “full term” are still at risk for respiratory issues, underdeveloped neurologic and digestive systems, apnea of prematurity (preemies tend to stop breathing quite often), other lung complications, and the potential for life long disabilities. These disabilities can affect any organ system in the body — neurological, respiratory, intestinal, and even the eyes and ears. Long term effects can range from minor learning difficulties to autism spectrum, cerebral palsy, or chronic lung issues.

The grieving process for parents of a baby born too soon is much like that experienced by those who endure a pregnancy loss. I do not want to suggest that the losses are “the same,” but instead that premature birth ignites similar processes of grief. The experience, perhaps even the “rite of passage” into motherhood, is disrupted by the sudden and unplanned early arrival of the baby, dismantling hopes and dreams for the “perfect” birth and baby. The fragility of life is exposed, and big dreams are reduced to hopes of merely escaping the NICU alive and healthy.2

Neonatal intensive care unit, 2009. (Bobjgalindo/Wikimedia Commons | GFDL)
Neonatal intensive care unit, 2009. (Bobjgalindo/Wikimedia Commons | GFDL)

Parents of premature infants leave hospitals with no baby in tow. Mothers birth live babies but return home without them for an extended period of time. There is not a loss of life, but a loss of experience, and a liminal state of identity.3 Is motherhood simply birthing an infant? Are you a mother if you are not the one caring for the newborn and are having to ask a nurse if even touching your own baby is acceptable? The transitional phase into motherhood when your child is in the NICU is different than what a “typical” birth would provide. “Typical” births allow not only for bonding with the new baby, but the exhaustion adjusting to what life is like with a baby. A premature delivery comes with beeps and alerts of monitors, exhaustion due to commuting to and from home multiple times a day (unless you’re fortunate to live close or have other resources), and the adjustment to life with a baby is delayed days, weeks, and even months. Instead of showing off your baby to friends and family, there is hesitancy to expose the baby to the germs of the world. If anyone visits the hospital, there are multiple barriers between them and the baby. The dreams of “normal” parenting are shattered by the fact that preemies often experience long hospital stays and years of managed care by multiple medical specialties even if they are not severely disabled.

Emily Perl Kingsley wrote a poem in 1987 titled, “Welcome to Holland,” describing her experience as a special needs parent. She says that it’s like packing and preparing for a trip to Italy only to land in Holland — a place you didn’t prepare for. While parenting a premature infant is not necessarily the same as parenting a special needs child (special needs and prematurity are not synonymous — preemies can grow out of their special needs, or not have any at all) the poem is an excellent metaphor for the changes experienced. Before and during pregnancy, there are dreams and expectations of what it will be like to parent and who the future baby will be. These dreams are often crushed by prematurity and its effects. Instead of landing in Italy, prematurity sends parents on a trip to Holland: beautiful in its own right, but not the trip they prepared for.

It’s different parenting a preemie, particularly in the beginning. A little more hand sanitizer, more doctor appointments, and an infinitely increased awareness of development. Typically parents get excited when their baby first picks its head up or rolls over. Preemie parents are excited when baby can bring their hands together, because it is indicative of finding the midline and is the first cognitive milestone. (Finding the midline is a way that the brain shows organization.) Development that most commonly goes unnoticed is a cause for celebration for a preemie parent. Because preemies are born before their bodies finished maturing, development is often delayed. The body needs time to finesse the neurological system and develop a reflex often taken for granted. The rest of development – gross and fine motor, expressive and receptive language, and all the intricacies of the brain — are typically delayed to match the original due date rather than the actual birth date.

While most of us recognize the need for parents to grieve miscarriage and stillbirth, we should also understand that mothers who birth prematurely need to grieve as well. Most mothers of premature infants do get to take their babies home, although significantly after their birth days, and that should not overshadow the trauma of a premature birth and lost ideals. The trauma and shock of what most often is an emergency situation should be given adequate space and time to process. It is refreshing to see miscarriage and stillbirth coming out from the shadows and becoming socially accepted and welcomed to talk about.4 Preterm birth, like all forms of pregnancy loss, does not warrant shame or guilt, and needs an open, welcoming outlet for mothers and fathers to grieve.

This post is dedicated to all the parents of premature infants as well as those who have experienced miscarriages and stillbirths. May you each grieve in ways that satisfy your needs, and may time make you stronger.

Notes

  1. March of Dimes Foundation, “March of Dimes 2014 Premature Birth Report Card” (2014). Return to text.
  2. Gay Becker, “Metaphors in Disrupted Lives: Infertility and Cultural Constructions of Continuity,” Medical Anthropology Quarterly 8, 4 (1994): 383-410. Return to text.
  3. Victor Turner, “Betwixt and Between: The Liminal Period in Rites of Passage,” Betwixt and Between: Patterns of Masculine and Feminine Initiation (1987): 3-19. Return to text.
  4. Linda L. Layne, Motherhood Lost: A Feminist Account of Pregnancy Loss in America (Routledge, 2014). Return to text.

About the Author

19 Comments

Faye Marie Dombrowski

Thank you for this article. I had a preemie back in ’84. I was an NICU nurse for most of my career but having one of your own is totally different. I was depressed & sometimes angry because I had lost out on the last 3 months of pregnancy. It was my 1st child. My pregnancy had been totally normal & I loved being pregnant. Having it cut short was a real shock. Some of my friends were pregnant at the same time & talked about their experiences the last 3 months & I would feel I had been cheated. Sometimes I felt she wasn’t my baby. I didn’t have control of her care. One nurse let me hold the feeding tube & this was exciting for me because I felt so useless. Then the next day some battle axe charge nurse said that just because I was an NICU nurse didn’t mean I should get privileges & I couldn’t hold the feeding tube any more. I hadn’t asked to hold it & in the NICU where I had worked previously we always sat with the parents & let them hold the feeding tube. She made it sound like I had asked to do this. As you can tell, 30 years later it is one of the unpleasant memories I have of that time. This nurse never even had a face as she didn’t tell me but told the nurse. All the nurses were wonderful except 2. Times have changed & parents are much more involved in their babies care now. They need that. I made it through & so did our daughter although she has learning problems.

Naomi Rendina

ThaNk you for your comment! The NICU is a rough place to be. I’m so happy that your daughter made it out healthy. Mine is now 6! She’s my hero ❤️

Leticia

I’ve been there. My oldest was born at 32 weeks in 92, my second at 37 in 94, and my adopted babies at 27-1/2 weeks in 2013. There is a huge sense of loss and connection with your newborn. Fears are amplified, I had to leave my first on in the NICU and we lived 40 minutes from the hospital. I went every day. Then so many issues once they are home.

Naomi Rendina

Thank you for your reply! It’s great that you were able to visit every day. Your baby benefit from you being there! <3

akarags

As a NICU nurse, thank you for this article. It’s always good to read stories such as yours, and should be read by all NICU nurses, to give us a better understanding of how parents feel, so we can give the very best care we can, and no less.

Naomi Rendina

Thank you for your reply! Most importantly, thank YOU for all that you do in the NICU. Nurses make ALL the difference in the NICU, not just physically for the babies, but emotionally for the parents. Your presence and willingness to just talk makes an impact. Some of my daughter’s nurses are still good family friends!

Laura Z

Thank you so so much for this heartfelt piece. I, too, had my share of the NICU. I had twin girls at 28 weeks by way of emergency c-section due to preeclampsia back in 2001. It was 2 weeks before Sept. 11th. Their birthday, the day most women descibe as the best day of their lives for me was probably the absolute worst. The weeks that followe were definitely among the weirdest.

My girls were 2lbs 6 oz and 1lb 9oz. 1lb 9oz stayed for 3 months, 2lbs 6oz was in for 2 mos. The most difficult thing for me was the feeling of helplessness. Every day was described to me as 2 steps forward, 3 steps back. They would progress in one way, only to develop a different new problem. For instance- their blood oxygen levels would improve only for one to develop a collapsed lung. Once the lung was healthy a malfunctioning central line was inserted into one of them- it was flat-out defective. She had to endure that twice. Horrifying! My baby would cry but no sound would be produced as she was intubated. I would sit there and rub her with my finger tip. MY FINGER TIP! There is no way to explain the feeling of not being able to soothe your child, let alone the feeling of walking over to her isolette after chatting to a nurse 3 ft away, only to find she is silently crying her eyes out with no one to hearing it or coming to her side to comfort her. About 2 months in I expressed my frustration to a kind nurse, who looked at me bewildered and realized I had no idea what to do and showed me how to gently slide both of my hands into the portholes and slip them underneath the mattress and gently rock her back and forth. I did it and she stopped crying immediately and my initial feeling of satisfaction was short-lived as it instantly changed to a feeling of guilt, for all of the times I merely sat there not knowing of this technique and allowing her to cry for waht seemed like hundreds of times before. I didn’t get to see my children’s eyes for the first 2 weeks of their lives as they were shielded with masks to protect them from the billirubin lights. One dad I was at one babie’s isolette and in my peripheral vision I noticed a nurse changing the bed linens in my other child’s isolette. The blue lights were turned off while she did this. I JUMPED up and said “THE LIGHTS ARE OFF!! IS THAT OKAY??” She looked at me like I was nuts and said “yes, I know” I excitedly asked if the mask could be removed for a second so I could see her eyes. She said “of course mommy!” and that is the way I first looked into my child’s eyes. I never thought to ask, terrified I might be asking them to compromise their treatment. I realize in retrospect how silly that was and how much a mother can just operate from a place of pure fear when going through an experience like that. I wondered why they wouldn’t tell you, understanding how something like that could make such an enormous difference to a mother of a baby in the NICU. How about coming in one day to find their complexion exceedingly red, only to find they were given blood transfusions during the night and since it was “new blood” it tends to be more “red”. How about walking in to find a nurse bottle feeding one of them for the first time. NOT ME, A NURSE. Yet another precious first robbed from me.

My advice to any new parent in this situation would be, no matter how horrified you feel, ask questions. I used to NOT ask questions out of the sheer fear of not being sure I wanted to know the answers. I allowed myself to wallow in this frozen state of not-knowingness. Ignorance is NOT bliss in this situation since what you THINK will be the answer often is NOT and the actual answer is usually not as bad as anticipated.

I could go on and on, but I will stop here and say thank you for writing this. Understandibly, everyone focuses on the babies and what the mother is going through gets overlooked. And as a mom you feel guilty for everything. Give yourself a break. Be strong. Realize there are good nurses and not-such-good-nurses. Try to listen to and talk to the good ones. It can make all of the diffeence in the world. And most importantly, both of my girls are strong and healthy. They just started their freshman year of HS and are both great students. Completely healthy. I thank god for that every day.

Naomi Rendina

Thank you for your reply, and for sharing your story! I really, really, understand that. You and I both know that while there, it is hard to not blame yourself and focus on everyone but you. There’s so much we could talk about! I am so glad to hear that they are doing so well. I hope they have an amazing time in high school! My tiny one is in first grade now, and the sweetest kid ever. She’ll always be my hero. <3

lidia

Thank you for this post. My daughter was born at 33 weeks and spent 3 weeks in the NICU. We are grateful that she was healthy other than typical preemie things (bilirubin, temperature, weight) so I felt guilty sometimes feeling like I “missed out” on the last weeks of my pregnancy. It felt strange looking at myself and not seeing my pregnant belly. Not to mention, the helpless feeling of not being there for your child 24/7 and having to leave them in the hospital every day — though you know they are in excellent hands. Speaking of, NICU nurses are amazing. I will always be grateful for the excellent care and attention my little one received, how welcome and reassured they made me feel, and how much I learned from them.

Naomi Rendina

Thank you for reading! I completely agree- NICU nurses are amazing people not only because of the care thy give our little ones, but for the support they provide the parents with. They don’t often know that just sitting and talking with us is priceless support. I’m so happy to hear that your little one is healthy. I also feel like I “missed out.” You’re not alone!

Teresa

So lovely to read this, my daughter was born at 23 week’s in 2005 and at the time all thoughts of my own welfare were put by myself to one side and then after almost a year in nicu I was so grateful and overwhelmed with joy that she had survived any feelings of depression were just met by guilt . My daughter is my hero too and I am in total awe of her daily, I am so proud of her unbelievable strength in coping with everything life still throws at her, we continue to fight on together! But there are still days when I find myself crying and I suppose grieving about the extremely traumatic start we had to our journey together. Let us all talk and share more! X

Naomi Rendina

Thank you for reading and taking the time to comment! It’s been almost 7 years for us, and her birthday is still the hardest day for me. She’s an AMAZING little girl though. You’re right…moms are often left out of the health equation, and few ask how they are doing. However, how often do we think about how fathers react and feel towards this type of loss? I remember the day the doctor asked me how long it had been since I had gone outside…at that point it had been 10 days (we were rooming in for 2/3 of her time there). I lied and said it had been the day before. Yes, let’s talk more!

Ashley Nichole

I often notice that pregnancy / infant loss awareness campaigns bring to light miscarriage, still birth, SIDS, etc but don’t mention preterm birth and subsequent loss. Many preemie moms do get to take home their babies. But many of us never did. Many of us spent days or weeks grieving the loss of the pregnancy and then years spending the loss of the child we felt we never even truly got a chance to parent.

Naomi Rendina

Hi Ashley! Thank you for reading and taking the time to comment. You are VERY right. The pregnancy and infant loss awareness fails to bring attention to the losses associated with premature birth. How do you propose we fix this? Many will argue that “at least you brought home your baby” to the preemie parents who did. It sounds as though you lost a baby after some NICU time,and I’m so sorry if you did. A dear friend of mine lost her son after 6 months in the NICU. I’d be more than happy to get you two in touch if you’d like someone to talk about that with!

TT

This is a wonderful article, thank you for sharing it. I’m so glad you and your daughter made it through your nicu journey. Huge hugs to you for the not so great experience with the charge nurse.

I agree with a previous comment, nurses really do make all the difference. In my case, it seemed the kind nurses were very few and far between. Most of the time, the nurses were quite rude and just plain awful. I remember getting yelled at for bringing all frozen breast milk for my son. I was never made to feel welcome there… it was like he was their property and I should have been grateful to be allowed anywhere near him. Getting out of there was the happiest day of my life, and not just for bringing my son home.

He’s 8 now. He has delays in speech, learning and an issue we haven’t truly identified yet. I’m so thankful he made it after being born 10 weeks early.

Naomi Rendina

Hi! Thank you for taking the time to reply, and thank you for the hugs! I’m so sorry that your experience with nurses was so difficult. I don’t think all nurses quite understand their role as well as we’d hope. My little one is about to be 7! Our littles are close in age!

Carolyn Carter

Wow. My cousin sent this article to my fiance and I. I gave birth at 26 weeks to a micropreemie, Jack Ryan, who weighed 1 pound 9 ounces. He is 15 months now and has a teach and gjtube and faces hurdles on a daily basis. I feel like I had so much going on in the beginning that I didn’t make the time to grieve like I should have. I guess I’m still going through the process now. I think it is hard for moms to let their grief be felt and suppress guilt at the same time. It’s hard to share these feelings with others because unless they’ve been through it, they won’t truly understand your reasons for being sad or dissapointed. I never wanted to come across as ungrateful for the things I did have. My son was still alive so how could I complain about anything, you know? But I’m learning how to balance my feelings. Sincerely, thank you for this article. I think it will help so many mothers. I hope to one day write a book. I would love to talk to you more about this and ways I could include this subject in my book. I also have a rare and life-threatening illness and this theme really applies with that too. Thanks again. Best of luck to you and all parents of preemies!

Naomi Rendina

Carolyn,
Thank you for taking the time to reply! I can get you in touch with some other micropreemie moms, if you’d like. I’m also available to talk more about any of this, and would love to support YOU in this journey! Please do not hesitate to email me, nrr21@case.edu, if you’d like to chat. My best advice is just keep talking. Time does NOT “heal all wounds,” but will allow you to gain meaning and understand not only the event, but yourself, in pretty amazing ways. Please email me! I look forward to talking to you. -Naomi

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