Hand to Hold's Official Blog: Written by Parents for Parents

Mourning a Loss That Doesn’t Quite Have a Name: Grief and Loss in the NICU

I think it’s safe to say it’s happened to most of us NICU parents. That piercing feeling, almost like a knife inside, that strikes when you least expect it; in fact, when you’re likely to feel the most ashamed and/or hurt by it.

When you see a pregnant woman striding down the street, clearly weeks later in her pregnancy than you were able to carry. When you peruse Facebook announcements proudly proclaiming beautiful chubby sweet infants that were delivered without issue. When you have to opt out of a holiday party because it’s RSV season and the prospect of your baby getting sick is too much of a fear to be able to attend it without intense anxiety. When you think back to those initial moments you were able to spend time with your baby, and shudder to think that you weren’t able to hold them to your chest, or sometimes, touch them at all. The fears you once held about changing their diapers, disturbing one of the wires attached to them, or their breathing equipment. The feelings associated with having to ask permission to touch them. Having your parenting on display in a hospital unit, as opposed to being the very private experience you had imagined it would be. When you hit your estimated due date, and gaze upon your baby, who’s been on the outside for awhile, laying in their incubator at the NICU. When you start experiencing anxiety and panic, as opposed to joy, as you approach their first birthday, and the memories of what their first days and weeks were like flare up and become vivid again. I used to wake up in the middle of the night feeling phantom kicks in my belly, only to realize that my son Elliott was still in the NICU, his twin William was gone, and it was time to pump milk.

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photo credit: John McGibbon

This is loss. This is grief. And this is an experience very common to all parents that have to face the NICU, regardless of whether they’ve lost a child or not.

In our culture, there isn’t much of a space allotted to individuals coping with grief. The common theories that are held in our culture are those outlined by Freud and other psychoanalysts. Most of these theories claim that the “end stage goal” of grief is to come to “resolution”, “find closure” or to “move on” after a loss. Oftentimes grief is cleverly outlined as something that can be predictable, that there are aspects of it that you can recognize as “normal” or the correct “stage”. This creates a challenging space for those experiencing grief, because it can feel as if there’s something wrong with you if you can’t seem to let the loss go after a delineated period of time. It overlooks the feeling that you’re deep in an abyss, without much to recognize your surroundings by, that your world may look unfamiliar in comparison with what you once knew.

This brings unique challenges for someone like a NICU parent, who has gone through a loss that you can’t quite put your finger on. If you are able to leave the NICU with your now-healthy baby, our culture asks, why are you still dwelling on the pain that you felt at that time? What is it that you even lost?

There are many answers, an important one being that we lost an older version of ourselves. We lost our self that lived in a world that pregnancies end without complication or trauma. We lost our sense of predictability. We lost weeks of our pregnancies, and as a trade had to watch powerlessly as our babies fought for their lives in a tiny plastic box miles away from their homes. We lost our right to make some of the first decisions for our babies. In some cases, we lost all the “normal” bells and whistles of a birth: showers, announcements, flowers and congratulations. We lost our ability to watch our babies grow without anxiety over their development. We lost our sense of “expertise” over our parenting experience, and oftentimes, we had to allow others to take the helm with therapies and medical technique in guiding us through their infancy and early childhood. We lost the ability to try for more children without the constant fear that they might spend time in the NICU, too. We lost our sense that the people around us understood. We lost a lot.

As with grief and loss in the case of the death of a loved one, NICU parents are often implicitly expected not to speak of their grief. Grief is an uncomfortable feeling for many individuals, and discussion of it can be interpreted as “morose” or “not looking at the bright side”. In my experience, this creates a “hiccup” in time. I went from my older self to this new, NICU mom self within a three day time period of pre-term labor, and struggled with how to come to terms with the vast differences that erupted. In fact, for awhile I forgot about my old self; I let her go and embraced the NICU mom self as my sole identity. The things I had cared about before seemed trivial and unimportant, and now everything was about survival.

elliott reaches out

photo credit: John McGibbon

In creating a space for grief, it can be beneficial for NICU parents to meditate about what it is that they lost through their experience. To name it. To embody it. To describe our relationship with it, and to integrate it into our lives in a way that feels meaningful. To recognize that loss; that loss that inexplicably binds our experiences to other parents who also went through a painful experience. In doing so, we not only provide ourselves with a healing space, but we also gain an incredible skill: the ability to teach our children about grief in a culture that would prefer to look away from it. The one thing that it is safe to say we “know” about grief is that if we are feeling it? Something important, something we loved; it is missing.

How does your grief play a role in your day to day life? Have you ever been able to give it voice? Have others acknowledged the loss or do you find yourself silenced when it bubbles up to the surface? Does the loss bring anything valuable to your current circumstance? Does it bring anxiety or negativity with it? Is there anything about your former self that you can bring with you into this new part of your story? If so, what is it?

In what ways have you grieved the loss you experienced when your baby was in the NICU?

Kara Wahlin About Kara Wahlin

Kara (CA) is a marriage and family therapist/art therapist located in southern California. Since the preterm birth of her twin sons Elliott and William at 26 weeks and the loss of William at six days old, she's made it her mission to try and use her skills as a therapist to reach out to help, empower, and nurture other families going through the NICU experience. She loves art, exploring, literature, music and doing wild and wooly projects with her son and husband. You can learn more about her on her website, NICUHealing, as well as her personal website. You can follow her on Facebook or Twitter.

Comments

  1. This is beautiful Kara! I realized myself, until I started admitting “ha you know what, that time in the NICU and the year following…..it sucked, it was tough”, I wasn’t allowing myself to create a place for that experience. Also, it makes it so much easier for me to talk about with my husband (who lived it too) and others. Being honest with yourself and allowing yourself to work through the process is so important. Thank you for sharing.

  2. Hi Dawn!
    Thank you for your comment. What you’ve said is so true… I think that there are a few implicit assumptions made of people going through grief by the culture at large, one being the idea that there shouldn’t be a lot of talk around tough things like loss, but another one too, that we oftentimes even hold of ourselves: the idea that we’ve got to be “strong” and stoic in facing it. I agree that a lot of the time you have to deliberately make a space to mourn to be able to get through it; and it’s so important to include your partner in the process.

  3. This is a beautiful article. My youngest 2 sons spent time in the nicu. My middle one was a 35 weeker and spent 12 days. My youngest one was a 36 weeker and spent 5 weeks. I never dreamed and wasn’t prepared for my youngest to be in there or for that long. The fact that I’d been through it before didn’t make it any easier and it was hard to explain why I was feeling grief. People would tell me at least He is healthy which would make me feel worse. He has been home for 2 weeks and I still feel like I lost a lot of time with him and my older 2. I am thankful I was able to give him 36 weeks but you do feel like you missed out and let them down because your body couldn’t give them more time in the womb. It’s hard to explain unless you’ve experienced it because it’s not normal.

    • Hi Sarah~
      Thanks for your comment; it’s great that you mentioned that loss of time with your older children when you have a little one in the NICU. It’s another really pertinent loss that most people (thank goodness) will never have to experience. But it is a “real” loss and, I’m sure, difficult to contend with.

      I also feel like any comments that begin with the phrase “At least…” should be banned when anyone is speaking with a person going through grief of any sort. It’s hard, because the intention behind it is usually to provide reprieve to the griever, but unfortunately it ends up glossing over the very real experience of pain that the griever is feeling, and can make that individual feel even more isolated, misunderstood, and like they’re doing something “wrong”.

      Also, although the NICU experience and our responses as parents are not (again, thankfully) typical, I think it’s hard to say what a “normal” response looks like until you’ve gone through some semblance of the experience yourself. What you’ve expressed here is *totally* “normal” (hehe I hate that word) or within reason.

      Congratulations your little one is home now, and take care.

  4. Thank you for this. I never felt like it was ok to grieve because my 24 weeker survived. After all we went through at the hospital those first few incredibly scary weeks, my only sobbing, couldn’t breathe, bawling for hours episode was months later when I packed up my maternity clothes.

    • Hi Libby~
      I think what you said about feeling almost like you weren’t allowed to grieve because your little one survived is a really important point to make. I think that’s what makes grieving this kind of a loss complicated, and sometimes even more difficult to talk about in mixed company.

      I can also completely identify with you regarding the maternity clothes… I remember putting away stuff that I had only gotten to wear once or twice, and it just brought back those memories of the lost hopes I had had of what things would look like in the future, and highlighted how different things actually were. Thanks for your comment!

  5. Thank you for this wonderful article. Everything you said, hits the nail on the head. As the Mother of 3 former NICU graduates, I have nightmares to this day, and they are all grown adults! I can’t change even with my own Grandbabies coming, looking (healthy and full term)at them and wishing that I was able to have that with my daughters. I made it to 26 weeks in 1982 with my first, 34 weeks with my second, and 30+3 weeks with my third. I also lost 13 to miscarriages. Time makes it somewhat better, but I don’t think it will ever go away completely.

    • Hi Ginnie~
      What you’ve said reminds me of the Rose Kennedy quote regarding loss: “It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”

      I don’t know why the notion that there’s only a specific amount of time that it is “normal” to grieve perseverates in our culture (I could go off here on the American Psychological Association’s notion of “normalized” mourning and grief, but I’ll save you a lengthy speech). Thank you for sharing with us here!

    • Thank you for this comment. I often feel like something is wrong with me…that I’m stuck or refusing to get over the births of my girls. My 28 weeker is twelve and my 30 weeker is ten. Shouldn’t I be over this? But every birth scene in every movie reduces me to tears. Every year around their birthdays I become a little beaten down by memories and loss. It was just today, with my therapist, that I was able to identify the overwhelming feeling that I was alone when I had my older. In a strange hospital in the middle of the night, with complete strangers around me, my husband not yet there. And then my tiny daughter whisked away, and me too sick to see her. But I tell myself they are fine. I have nothing to grieve. My heart knows that not to be true. and knowing you still feel the same way makes me feel less alone. So thank you.

  6. I was just talking to a friend about bows on baby girls earlier this week, and I remembered how annoyed I was that our NICU nurses would put bows on my daughter’s head before I’d arrive in the morning. “I’m the mom–I should decide if she has a bow or not!” I didn’t want anyone making decisions that were mine alone to make. She’s six and a half now–I still never know when these feelings will surface! It’s these types of moments that remind me how out of control I was those first 135 days.

    • Hi Melissa~
      Thanks for your comment; such a perfect articulation of a type of loss that’s so difficult to describe why it’s hard to someone who hasn’t been there themselves. It’s challenging to have all of your ideas about what you wanted to have happen with regards to your baby, be shifted without you having much recourse to resolve it. The bows are a perfect example of some of the things that become even more apparent as a loss after discharge, when you can take stock and realize just how much was actually taken away, and how the loss permeates most every aspect of parenting. It is so hard.

  7. Thanks for this article – I had my little girl at 31 weeks after eclampic seizures – there is definitely a huge grief there that I didn’t meet her until she was three days old – being so sick, at different hospitals and then my memory being really fuzzy anyway; and that so many others met her before me. I think the idea that you grieve for the normality you were expecting to have is one that is hard to explain to people. I find talking to other mums in playgroups to be when I get a little niggle of grief popping up as they describe going to 42 weeks, or complaining of pushing out a 9 pound baby – and especially when they talk of that rush of love when you see your baby for the first time as they are placed on your chest. Its an interesting thing to think on – and acknowledge 🙂

    • Hi Rae~
      It is such a salient point that when your birth experience becomes something that feels traumatic or rife with medical interventions and so different not only from what you had hoped for, but from what other parents may have experienced, that that loss of “normalcy” can be so painstaking. I definitely encourage making space to think about it and to identify what it is that you may have lost, so that the piercing feeling when something triggers the memory can at least be identifiable, and hopefully someday more manageable. Thank you for sharing here!

  8. Thank you for sharing this post. It really hits home for me, our third baby was born at 31 weeks due to preterm labor and complications from my plancenta previa diagnosis. After having two previous full term healthy, easy deliveries I was in shock for a long long time over the emergency c-section and 6 week NICU stay we went through with our little guy. It really was all about survival, for me for probably the whole first year. He is now 2 and 1/2 and I still feel sad sometimes over the loss of not having a full term pregnancy, the feeling of all loss of control, and the hardest one the loss of not being able to hold my newborn in my arms and having to walk away from his isolette every night and feel like I was leaving him.
    Thank you for sharing this and identifying so clearly what is often felt but not often discussed.

    • Thank you so much for your comment Andrea. And yes, that feeling of having to walk away from the hospital without your sweet little one is a feeling that no parent should ever have to go through.

  9. Thanks for this great article. Both of my boys were early (34 weeks, and 28 weeks). My older son spent 48 days in the Nicu and required cardiac surgery and my younger son spent 110 days in the Nicu, requiring myriad surgeries, including a shunt for fluid in his brain. He was not supposed to live past his first 12 hour nursing shift (I have been told, by a nurse who has become like a sibling.)
    I was told to try counseling, to deal with this PTSD I had from that experience. The reason why your article is so interesting is that the counselor I saw (for 6 weeks) insisted that I name my emotions related to the experience, and then “get rid of them” one by one. After trying this exercise for several weeks, I realized those emotions, the guilt, fear, anger, grief, etc that I carried with me… they were part of me. And many days those emotions were the only things forcing me to get up and argue with doctors, gave me the strength to advocate for my boys with therapists and then school. The Nicu, for better or worse, made me the parent I am now. And, while I doubt myself often, constantly wonder if I’m making the right choices for my boys, I know that I’m doing the very best I can because those emotions push me to do so. They no longer run my life; they’re just part of who I am.

    • Hi Bethany~
      That’s so interesting about your experience with your therapist. Although I can’t really comment on it, not knowing what his/her approach might have been, their treatment plan or their specific training, I can tell you that as a therapist, our training around grief and loss can be frustrating. It’s surprising how much modern psychology clings to the older notion of “letting things go” or “moving on” as the “goal” (the new DSM defines “normative” mourning as lasting 2 weeks[!!!!!]). I’m really glad to hear that you were able to come to the realization that for better or worse, these emotions were things that maybe weren’t the simplest things to get rid of, and that they played a sometimes important role in your ability to advocate. Thanks so much for commenting here.

  10. Don’t forget the NICU parents of full term babies! We spent 32 days in the NICU after having our baby at 40 weeks, 5 days. We missed out on a lot too. No one really understands having done all those traditional pre-baby things and then leaving the hospital with no baby, unless you’ve done it. I’ve spent a lot of time explaining what happened at length because everyone always wants to know how premature he was.

    • Andrea – thanks for chiming in! We appreciate your perspective. We need more writers that understand what term moms go through… if you would be interested in chatting, I’d love to hear from you. Or even if you know a term NICU mom that would make a good contributor to our blog, please pass on our info! Thank you, Angie Bickford, PB101 Lead Blogger

    • Hi Andrea,
      Angie is right, thank you so much for speaking to your experience here! It is such an important voice, and one that can be overlooked at times. Another parent at our NICU during our experience had a full-term baby who was struggling with some medical diagnoses, and I remember the parents speaking to the sense of alienation they felt because most of us parents at that NICU at that time were preemie parents. Nonetheless, you still go through that same sense of powerlessness and loss any time your baby spends time in the NICU. Thanks for sharing.

  11. Leslie harris says:

    We spent 115 days in the NICU. My son was born at 27 weeks. He now is a year old and doing great. I can relate to some of the other woman. I never know when my emotions will get the best of me. I am still extremely angry. all of his the firsts were taken from me. I hated that most of the decisions of his care were made by strangers not his parents. i do feel guilt that he is healthy and I still am so angry. I feel like society thinks that now we are home and he is doing good that I should just forget about what we went throught for those 115 days. If u have never experienced the NICU then you have no idea. It really changes a person!

    • Hi Leslie~
      Thanks so much for your comment! It’s true, the NICU drums up emotions and feelings that can be so unpredictable, can make others feel uncomfortable, or make us as parents feel guilty. Thank you for sharing this here!

  12. Thank you. I am the mother of a 26 weeker (stillborn), a 29 weeker and a 32 weeker. I have also lost two babies to early miscarriages. You put into words so much of the loss that I have felt but not named. Thank you.

  13. Michelle Munoz says:

    This is so true! As a mom I felt cheated & robbed of all the joys that were to come. Baby showers, birth announcements, dilivery, first time seeing them, first touch, bringing them home, first holidays. I also felt horrible for my poor husband who was torn between being with his twin 24 weekers or his wife who had an emergency c-section and was 65 miles away. We lost one of our sons after 2 months in the NICU and felt like we couldn’t mourn his loss because we had to continue to be there for our son who was still fighting for his life. I would hear over and over but at least you still have one… Like that made it easier. We spent 7 long months in the NICU with our son befor we got to finally bring him home. We still to this day haven’t really delt with our sons passing. Our little fighter has been home 6 months now and just celebrated his 1st birthday, it was bitter sweet for us. Grateful our son is finally home and for the most part healthy, bitter that our other son did not make it. Again filling cheated & robbed of what should have been. I found myself recalling what I was doing the prior year the month leading to their birthday. This has been a crazy journey, one that has truly changed is forever!

    • Hi Michelle~
      I am so sorry for the loss of your son (in addition to all of the loss you experienced). Unfortunately, we’ve had that same situation of hearing the “At least,” statement regarding the fact that one twin survived. It is so challenging to cope with, and unfortunately (at least in my experience), it still pops up occasionally three years later.

      I hope that you and your husband can make a space for grief for your loss someday. I completely identify with the idea that you can’t really process it when your survivor is still fighting for their life in the NICU. If you’re interested, there is a book about twin loss has been useful to us; it has the perspective of many different individuals who have been through that kind of loss and it was a little helpful in helping us figure out how to cope. If you search Amazon for a book called “The Lone Twin” by Joan Woodward, it may be of some use to you and your family. Take Care.

  14. Kara,

    This is the most amazing article. You have articulated and put a name to things I only knew in feelings. That is very hard to do. I’ve shared several times now – both in our hospital’s post-nicu support group and also on my own blog’s FB page. This sentence: “Something important, something we loved; it is missing.” I don’t think I’ll ever read that without a tingly nose!

    I wrote an article a few months ago on this very topic but it was like an intro to this one! (http://www.jessicabensten.com/the-thing-no-one-tells-you-about-having-a-preemie/)

    Looking forward to reading more from you! No pressure 🙂

    • Hi Jessica,
      Thank you so much for your comment. Your article is beautiful and has that effect of putting language to the feelings that can be so hard to describe!! Thanks so much for sharing!!!

  15. In retrospect, I’m fairly sure that we experienced some degree of PTSD symptoms in the aftermath of our NICU stay. I did grieve over the loss of my last trimester, grieved every single time i had to leave the hospital without my baby… It was traumatizing having a complicated pregnancy, being suddenly hospitalized on bed rest for almost 2 months and being away from my other children… The uncertainty was more than difficult, delivering at 29 weeks was terrifying… We were fortunate, there were no complications beyond basic prematurity problems like apnea, weight gain, body temperature and stable heart rate, and once she hit 5 lbs all those things stabilized. She’s 4 now, you’d never believe she was a preemie. But it was all very traumatic, and no one understood just how traumatized my husband and i both were, and i don’t know how many months went by before we were kind of okay again. Parents need to know these feelings are normal, and every hospital should offer support groups and counseling for families enduring a long term NICU stay.

    • Hi Alice~
      I totally agree. I think that in being expected to be “strong”, NICU parents’ very real emotions and experiences can be overlooked. It can be so very isolating and so damaging to relationships; I feel that services should be provided to anyone having to go through it, both while in the NICU, as well as months later (since sometimes it takes awhile for certain reactions to manifest). Fortunately it seems many NICUs are starting to equip themselves with staff to lead support groups; and there are awesome online resources like Hand To Hold! Still, I hope that someday therapy becomes something that is subsidized/provided for free for parents facing the hospitalization of an infant.

  16. Wow, this is beautiful. You have expressed what I have felt, yet I always feel awkward bringing it up around my friends with “normal” experiences. The NICU is my normal. I am so sorry for the loss of your one of your twins. My heart breaks for you knowing what that feels like. We had identical twin boys. Mason was in the NICU but his identical twin, Noah, did not survive. It was so hard visiting Mason and seeing other twins right next to him. It was still hard when our youngest son, Hudson, was in the NICU and he was right next to a set of twins. Thank you for writing this.

    • Hi Lori,
      Thank you for your comment, and I am so sorry for your loss. It creates such a different experience in a family than anyone could have ever predicted. I mentioned the book “Twin Loss” in another comment, it’s given us a little help. Also Pema Chodron’s book “When Things Fall Apart” has been helpful. It is so hard to navigate such an unfamiliar world, and I completely understand that feeling of being triggered by certain things, even years later. Take Care.

  17. Thank you for writing this, it is the perfect way to describe how i feel. I was put on hospital bed rest at 25 weeks due to very low amniotic fluid. I was very scared as we prepared to possibly deliever a very small baby and not knowing if she would even live as we had no idea how her lungs would be developed if at all. Well i thankfully made it to 30 weeks and 3 days and i believe she was trying to flip but ended up breaking my water instead. I labored for 4 1/2 hours and then they got her out in 2 minuets via c-section since she was breach. And she cried which made everything right in the world. But i had this vision i would get to hold my baby right after birth but that got taken away from me and when i got to go home 4 days later and she didnt my heart broke cause i kept thinking this isnt how it was supposed to be, it was so unfair. A month later she did come home but i hated that we didnt get that special private bonding time and that i couldn’t be the one to care for her 24 hours a day. I spent every moment i could with her and hated every time i had to leave. Now i just have a hard time thinking how all we went through it was a lot and when i try to talk to some people about it they brush it off and say well she is healthy and everything turned out fine, but we are only at the beginning, we dont know if she will have developmental delays and what not. I think some people think once you leave the hospital then you have no more worries but that couldnt be further from the truth. Sorry im rambling now, just wanted to share and vent. Thanks again for this.

    • Hi Krista,
      No need for apologies; it’s ok to vent here, especially amongst other parents who have a sense of how painful all of what you described can be. That feeling that “everything is supposed to be all right now, they’re home” that can be expressed by others, is so challenging to contend with. Thank you for sharing here.

  18. I was hospitalized at 24 weeks and I delivered my twin girls at 28 weeks by an emergency c section. Not a sound could be heard in the delivery room. Seemed like hours before I heard one small cry from one of my daughter’s. Than I was brought back to my room and told they probably wouldn’t survive the night. Had to make a decision to have my girls Christened and given their last rights all in the same night. They defied the odds and made it through the night. It tooks weeks before I could bring the one twin home. It took many months of ups and downs before our smallest twin still in the hospital had taken her last breath. That was almost 20 years ago and that pain is always there. There are so many bitter sweet emotions still to this day. Things that I will never experience but mostly the things her identical twin missed out on. I often wonder if she feels a part of her is missing and if that is why she has grown in to such a quiet and smart girl girl who is always striving to learn and observe the world around her. There is no amount of time that heals the wound of losing a child. The time simply makes us learn how to hide those feelings from the rest of the world so we can continue to move as normally as possible through life. Those emotions and memories will be there until I take my last breath.

    • Hi Nicole,
      Your story is heart-rending, and I think that what you wrote; “There is no amount of time that heals the wound of losing a child. The time simply makes us learn how to hide those feelings from the rest of the world so we can continue to move as normally as possible through life. Those emotions and memories will be there until I take my last breath.” it just hits the nail on the head with regards to grief and loss. I am so very sorry for your loss. Thank you so much for sharing here, and take care.

  19. Thank you so much for writing this. My 32 weeker is now 6 months old and I still wake up in the night thinking of her birth. I didn’t get to see her for over 24 hours because pre-eclampsia symptoms.
    I worked with a therapist with the grief because it hit me very hard. She describes it as the grief of an experience, that I am grieving the experience of birth that I didn’t have and that I dreamt about in pregnancy.

    • Thank you for sharing here, Sue. It’s so good to hear that you were able to make that space to grieve your experience. It’s so hard to work through that and make that kind of acknowledgment of a tough experience. Take care.

  20. This is indeed a timely post for me. My son turned one on the 13th Feb. I’ve spent the weeks leading up to his birthday reliving the stress of the weeks leading up to his birth. We knew he’d have to come early due to multiple pregnancy complications, but I hadn’t expected a NICU stay – I thought 35 weeks just meant he’d be little… Not born with “the lungs of a 25 weeker” as one neonatologist described. Like other mums on this page I was separated from my family – my husband having to split his time between Reuben in NICU, our 3 yr old and me in ICU in another hospital. I kept thinking of all the things I didn’t get – a natural birth, no skin to skin when he was born. My empty uterus but no baby in my arms to show for it, reopened the wounds from my 8 early miscarriages. My family couldn’t understand why I was grieving so much. He was a fighter and he’s ok now, but the wounds left behind are still there. Thank you for this post!

    • Thank you so much for posting, Des. It’s important to bring up that a traumatic birth experience ends up affecting everyone in a family. It is so hard. I think it’s also important to remember that just because someone has a baby who is “late preterm” or even term with medical complications, doesn’t mean that the NICU is simple or easy to get through at all. Thanks for sharing.

  21. A lovely article and well written. We nearly lost my son at birth, with an emergency c-section and placental abruption. He spent 10 days in special care nursery. He was born at 37 weeks after preterm labour from 34 weeks, so not technically a preemie. He has had many health issues since, including a suspected genetic condition that so far has not been confirmed or even identified.
    What you don’t mention, and what I grieve, is the loss of a ‘normal’ child. I know I shouldn’t compare, but I can’t help but feel a sense of loss as I watch the others in my mothers group learn to walk and talk and do all those things we take for granted. My son is so far behind in his development, but we celebrate every milestone no matter when it comes. We don’t know if or when he’ll ever catch up, and we don’t know what the future holds for him – whether he’ll ever be ‘just like the other kids’. There’s a sense of loss about that too, a loss of the hopes and dreams that we all have for our children. I feel like I can’t think about the future, picture him running around or saying ‘I love you mummy’ because we just don’t know whether that’s realistic for him.
    Now because of all the stress and worry and not knowing if he’ll need our undivided attention, my husband doesn’t want another child (he is our first), and that gives me another sense of loss, the loss of a chance to experience it all again and ‘make up for’ the first time (if that’s even possible?).

    • Hi Caroline~
      What you’ve talked about here is so important, and I’m glad that you’ve given voice to it. It *is* such a loss to have to have a completely different experience in parenting than what you expected. Have you ever read the poem “Welcome To Holland”, by Emily Kingsley? Your comment brought me back to that poem, in which she speaks to the sense of alienation you feel in having a completely different experience than what you expected to have, that it’s almost like learning a different language. I highly recommend you google it if you haven’t read it.

      And the loss that you speak of, the loss of hope that maybe things could be all right with another chance? Or the loss of another chance? I imagine many readers here identify with just that very notion. Thanks for bringing it up; and thank you for sharing here.

  22. Thank you for this article. My NICU baby will be 2 years old in 9 days and this time of year is filled with such reflection. To have given birth to a “healthy 9 pounder” who was then taken to the NICU about 12 hours later was unfathomable. Alone, confused, and scared, I walked her down. The next week was a surreal experience – especially the return home without her and parenting two children. There’s no preparation for the heartbreak that comes with parenting a child in the NICU and the older sibling at home. You never feel fully present for either. And when in the hospital I felt strange, as if my big, full term baby didn’t quite belong there, though her life depended on it too. Yes, there was mourning; especially when her return home couldn’t really be shared. But more than just the mourning, for me at least, was this overwhelming snowball of emotions that I simply didn’t know how to handle.

    • Hi Melinda~
      Thank you for speaking to the struggle with having older children at home and how challenging it must be to have to balance being in the NICU with parenting an older child, and not feeling present for either.

      I also really appreciate that sense of not feeling like you “fit in” in the NICU (due to having a full-term baby) that you’ve expressed. I think we’ve heard a lot of really powerful conversation in this thread about the challenge of feeling “other”, even in communities in which you have a lot in common. I think it’s something that’s definitely worth speaking to in the future here.
      Thanks so much for commenting.

  23. Mary Lou Bowen says:

    I just stumbled on this article and after reading many of the responses I felt I had to add my own. I am 76 years old, and have four living healthy children, 12 grands and eight greats. But we lost our firstborn six hours after her birth – a week of labor, some induced, six weeks early, later determined by a different doctor. I won’t go in to detail, but it was a brutal experience, especially for my husband, who dealt with all the arrangements as I didn’t leave hospital for nine days. You never forget, I have moments of grief yet, stronger than at the time. I think I was just in shock for a long time. This was all brought home to me nearly a year ago when a granddaughter went into early labor and delivered twin boys eight weeks early. They spent six weeks in NICU and when they came home I spent three weeks with them, monitors, etc. and all. They forever are implanted in my heart. They are well, they are healthy, they are normal little boys and their mother is strong, but her experiences in NICU, while 99% positive, have left her with a great deal of grief. Much of it for other mothers and babies she left in NICU, many with no promise of better days. I can testify that the grief doesn’t go away, or diminish. It is always in a mother’s heart. It is still that mother’s child, who is just not physically present. And there is nothing wrong with that. Having another child does not take that one’s place, he or she just joins it in the family. So grieve, but don’t let it overwhelm you. There is much good living ahead. I promise. My husband and I are approaching our 58th anniversary and our children, grands and greats, fill our lives with joy, laughter and pride.

    • Mary Lou, thank you so much for posting here. What you’ve said about how your grief feels for you at this time in your life is inspiring and incredibly articulate. I can’t imagine what a wonderful presence you were for your granddaughter and her sons, in being able to provide some reprieve in having a sense of some of what they must have gone through. I also really liked what you said about how the grief will always be there, but don’t let it overwhelm you. Inspiring. Thank you.

  24. This article provokes a lot of scabbed over feelings for me. Scabs that crack open and let the feelings and emotions come flooding out when its least expected. My son was born at 34 weeks, small but healthy and able to breath on his own. He was, by far, not the sickest child in the NICU. After a month stay we were able to bring him home and move forward with our new life. We thought things would start to move towards normal. Everyone, including doctors, told us that he would catch up. He would catch up in weight, height, milestones, and the like, except he didn’t. After almost a year, the doctors finally acknowledged that he had developmental delays. Once again, we felt the grief of being cheated. This time it was being cheated out of a “normal” child. When you leave the NICU, there’s this idea that things will be on the up swing and that although your life together started out rocky, things will start rapidly approaching the normal that most people experience with having children. I know that everyone says you’re not suppose to compare your child to other’s. That all children develop on their own schedule but it’s virtually impossible not to. Babies are every where and no matter how much you tell yourself not to, the comparisons still happen. That nagging little voice is back making you wonder what did you do wrong for this to happen. It’s difficult for others to understand. It’s almost like trying to talk about having a miscarriage or still born baby. It makes people uncomfortable, especially when there’s no apparent reason for it. For my son, there is no medical reason for it. Every test they have run has come back normal. There is no diagnosis, no classification, no reason for why he is this delayed. He doesn’t fall into a neat little category. It’s sole crushing to have to explain to every therapist, doctor and nurse we encounter that we have no reason.

    This grief also plants a little bitter seed inside that keeps me from enjoying other’s babies. I have a nephew who was born (full term) almost a year after my son. To this day, I still have a difficult time being happy for him or his family. It particularly difficult to trudge through the grief when there are so very few that understand. So we soldier on, celebrate the milestones when they happen and wait for this to feel like our normal. We put on our happy faces, let the wound scab over a little and wait for the next time the scab breaks loose and the emotions flood out again. Because this is another form a grief that very few understand or want to talk about.

    • Hi Heather~
      I really like the analogy you made to grief being like a scab. I think it’s true, that although it flows through us in some ways and in some ways it’s always present, that we make it work and try not to dwell, only to sometimes be surprised by it showing itself at the least desirable times.

      You also touched on another really interesting point, about how frustrating it is when there isn’t any reason behind something happening. I actually wrote something on this a little while ago, about how common it is to blame ourselves for our own trauma (or our babies’), and how this phenomena spans different kinds of traumas. It’s also hard because in our culture, I think it’s somewhat expected that there’s always a reason behind something happening. My husband and I, through our experience, wracked our minds trying to figure out what it was that we did to cause my preterm labor. It is such a challenging experience, and I’m really glad that you brought it up here, because I think a lot of parents feel it.

      Thanks so much for posting here.

  25. I have never experienced such loss, and I honestly didn’t know so many people suffered from these circumstances. I thank the Lord that so many of these premature miracles survive. Modern medicine is a true blessing.

    I am saddened that in this entire thread there is not one mention of asking for our Lord God’s help in making it through this feeling of loss, or in thanking Him for the miracle of survival at such an early stage.

    Perhaps if there were more faith in our society, the grief would pass, and the miracle would be more appreciated.

    • Hi Teresa,
      This is Angie, the manager of this blog. Thank you for your comments. I just wanted to touch on something in response to your comments about faith…

      First, a little background. I had 27 week old triplets in Dec 2011. They were born very sick, and sadly, Carter passed away 49 days later. It was one of the closest moments I’ve ever felt to God, like he was in the room with me helping Carter pass. My faith has played a huge role in my coping with both my surviving preemies and my emotional grief from losing Carter.

      That being said… I would venture to guess that at least 1/2 of the posters would tell you about their faith; that they have it. BUT, the post was about grief and how it works in relation to prematurity or NICU. Everyone deals with grief differently, and faith is often a very private and personal part of that.

      Please know that people who grieve – whether they are a person of faith or not – DO appreciate the miracle before them. They DO thank God, even if they don’t believe in God – I’ve seen it first hand. But grief is not cut and dry. Grief does not leave us. Ever. It is always with us, and for me, I know that my faith helps me cope and I give my feelings to God daily. We do not ‘make it through the feelings of loss’. There is no through…

      Lastly, it is my personal belief that one of the biggest obstacles of overcoming grief is not whether a person has faith or not, but the way society puts expectations on the grieving. Timelines, rules, opinions. It’s taboo to talk about, and it is our hope by writing articles like these that others will begin to understand that grief becomes a part of a person, not something that passes.

    • Teresa,
      Thanks for mentioning the faith portion of this.

      It is because of my faith that I was able to give words to my grief, to scream and cry and yell at God when all the medical professionals went away for the evening and I was left alone in my hospital bed.

      In my experience, faith does not make the grief pass, but rather gives us a God who understands when the society around us wants us to bury our pain. Frankly, the grief does not pass. It comes in waves that start out huge and sometimes subside to small ride-able waves, but the waves are always there, with a strong rip tide underneath that can drag us out to sea. The deep soul hurt is unpredictable.

      Being able to share the grief brings my head above water, helps me breathe as we tread unknown ground. I now recognize this grief in other people, I see it in steely eyes that try to hold back the waves of grief. My pain is not theirs, theirs is not mine, but when our eyes meet and our stories are told, sometimes there is a common understanding, and sometimes long pent-up tears are shared. Maybe there’s a blessing in that.

      I am glad you have not experienced this sort of loss.

      I am also glad that my God allows grief, because my subculture would re-write the sermon on the mount to say “Blessed are those who buck up and bare it, for they will see that this too shall pass.” (Jesus’s words were: “Blessed are those who mourn, for they will be comforted.” I’ve never understood that more than when I experienced the pain of the birth of my son on the cusp of viability.)

      I am grateful for the friends and family around me that allow me to curl up into a corner and cry when a mourning hits strong. I’m so so grateful for the friends that didn’t try to find the right words, but instead let me just mourn.

      If you’d like to read more about a spiritual response to NICU pain, I wrote several blog posts a while ago about faith and pain. Here is one that links to most, if you want to read more from a faith perspective:
      http://momofa23weeker.blogspot.com/2014/06/the-gift-of-presence.html
      There’s also this: http://momofa23weeker.blogspot.com/2014/12/surviving-your-childs-long-hospital.html

      And regarding grief and guilt, there’s this post on survival guilt. Over half my son’s peers did not survive long enough to go home. There’s a tragedy and pain in that, too. http://momofa23weeker.blogspot.com/2014/01/guilt-part-ii-survival-guilt.html

      I hope this helps fill in that gap for you. Thank you for reading, because by putting ourselves in others’ shoes, we are able to see and respond so much better.

      Best, Laura

  26. Interesting comments. My daughter experienced the NICU with triplets and, sadly, only two survived. I can relate to many of your feelings of grief and loss, although it wasn’t first hand. Remember always having to wash your hands so carefully before entering the NICU? To this day, every time I hear the sound of an automatic paper towel dispenser, my insides go into knots. As a grandmother, I grieved for both my daughter and for my grandson but couldn’t find anyone to talk to. I felt so alone but tried to hide my grief so I could be there for my daughter. You are right, Kara, it doesn’t go away.

    • Hi Deann,
      Thank you so much for your response. I think grandparents can be so overlooked in the perception of the grieving process. It is so hard to take on the expectation of being “stoic” or “strong” in the face of trauma. And yes, to this day the smell of certain brands of hand sanitizer brings me right back to the hospital. Thanks so much for commenting.

  27. This article explains much of what I felt about my daughter being in the NICU, but I always felt like I wasn’t allowed to feel those things. You see, she wasn’t premature, she had low blood sugar. She didn’t spend 60 days in the hospital, she spent 6. But I was still heartbroken over the entire ordeal and suffered a great deal of depression because of it. I was induced for pre eclampsia at 37.5 weeks. I expected to deliver my baby girl naturally, have friends and family in and out of our postpartum room to meet her, and then go home with my little one. Long story short, after a host of interventions I wound up having a c-section and my baby was whisked away before I even got to see her for more than 30 seconds. While I was in recovery waiting for them to bring her in a nurse came in and explained that she had very low blood sugar and was being admitted to the NICU and that since I had just had surgery I wouldn’t be allowed to see her until the next day. It was like a rug was pulled out from under me and I spent the entire night crying instead of snuggling with my baby. I barely got to see her for the three days of my stay for this reason and that (mostly new admissions to the NICU where they wouldn’t allow visitors) and at the time we lived pretty far from the hospital and didn’t have a car, so we only got to visit for about an hour a day. Still, I felt like a terrible, selfish person for the way I felt; All the other babies there were so tiny and fighting for their lives, and there my daughter was with her measly glucose drip and slight jaundice. I felt like I had no business being sad, and I think that made it worse.

  28. Elizabeth says:

    I found that I would tell people about my losses and then would follow up with an “at least” statement 🙁 My baby was in the nicu for six weeks, he was born at 31 weeks, we arrived home this past March 5th. It was and is a terribly difficult experience. I feel like a crazy person, trying to monitor what my other two kids touch and what they are doing for fear that they might pick up a germ or bug. The guilt is overwhelming.

  29. Wow, reading this I finally knew what I feel is what other NICU families experience. I am the grandmother of twin 26 week preemie girls. Now, perfect 18 months old. I was with my daughter and son-in-law the 10 days my daughter was hospitalized before delivery. My daughter suddenly went into labor at 24 weeks and with two rounds of Mag and steroid shots for the twins, was able to make it to 26 weeks. After, 96 days in the NICU, the twins came home. I spent every day at the NICU with my daughter and my son-in-law came every weekend. Now that the twins are perfect, everyone expects us to act like nothing happened. my daughter almost died, the twins almost died, the 96 days in the NICU were filled with many challenges and scary moments. These are my daughter and son-in-law’s first children. My daughter didn’t get to experience her three planned baby showers, the professional pregnancy pictures, decorating the nursery, sending out birth announcements, or any of the last months of pregnancy. We brought the babies home in January and they needed isolation for the first year. Now, when I walk the babies and people ask their age, the first comment is that they are so tiny. Yes, they are small compared to the average 18 month old, but gestationally, they are at 50 percent. There is grief and there is emotional adjustment to accept that now they are perfect – absolutely no health concerns. Yet, the memories of their struggles to get here haunt us often. Thank you for writing this amazing article!

  30. Thank you for your article. It brought be some comfort in the way I feel. I share alot of the same sense of loss even though my child was overdue 41+4
    For me the hardest part is that I thought I had nothing to worry about except induction the nexf day, how wrong I was. As I’m sure a lot of mothers on here experienced an emergency section then my baby whisked away without so much as a kiss. But the image that haunts me is getting taken to my room and seeing a nurse walking around with someone’s newborn and the sounds of babies crying whilst my own baby was a floor below me. It was a lonely night.
    I felt in a limbo in ward and also in nicu – our baby was 7,6.5lbs at birth so looked huge compared to other babies.

  31. Thank you for writing this; for putting into words the things that go through my brain. My boys Logan and Dylan were born at 25 weeks. Dylan only lived nine hours and, do to miscommunications, I never got to meet him alive. Logan is now one but the anxiety of milestones is very real. He has hit 6 surgeries and still no major milestones. I am a “normal” working functioning mom with a crazy 3 year old as well. But there are always nights like tonight where the grieving hits spontaneously.

  32. Emily Berg says:

    Hi Kara,

    Thank you so much for this. I delivered my baby, Ruby on Saint Patrick’s Day via emergency C-section at 31 weeks, five days. I had been on bed rest in the hospital since 27 weeks and was hoping to make it to 34 weeks, but my blood pressure began climbing, so it was time. Ruby was discharged from the NICU on May 12, two days before her due date. Now that I’m more reassured that we are both safe, I’ve been flooded with grief and loss about our experience. Its been overwhelming at times and also challenging to educate others about the enormity of this loss. Your post gave words to my heart. Thank you. :)Oh, and I’m also an MFT! 🙂

  33. This is such a fabulous article and really helps me. My story is similar to others but of course unique in its own way. I am learning that I need to reprocess it, to rewrite a lot of the negative parts (particularly the things that were said or mismanaged) which will help me learn to deal with the pain and grief. I have lost a lot through the experience that many people do not understand. It saddens me that they do not understand, it is isolating but I know that no matter how I explain it, they will not ever understand. And I actually hope they don’t, because it probably means they have had their own preemie.

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