Releasing feelings of guilt and blame when your child is born with an illness

We couldn't hold our son right away, so we read to him.
For mamas who also had sick babies at birth: How do you cope with/mourn missing out on those first precious moments and days? How do you share with others about your experience? How do you share with your child about what she/he/your family went through? How do you parent with the knowledge that your child may have issues down the road or may not? How do you combat the feelings of unfairness? Do they ease with time? How do you deal with issues of guilt even if you know on a rational level that it isn't your fault that your baby got sick inside of you/coming out of you? — P

My son was born two months early and spent a month in the NICU. Part of the reason he was there so long was simply to grow, but he was also born with two conditions. We didn't know about one of them at the time, but due to the rarity of the other everyone was both very aware of it and somewhat stressed by its existence.

I'll never forget the moment I realized I didn't get to hold my baby right after his birth like I was "supposed" to. It wasn't when you would think (immediately following the birth), but instead it happened several hours later when I sat alone (my husband was with our son) in my half of a shared hospital room and listened to the woman next to me coo at her baby. All of a sudden it hit me: I didn't get to do that, and I didn't know when I would. I asked to transfer to my own room and mercifully they had one open, and I spent the rest of the following four weeks visiting the NICU for 12-15 hours a day.

Luckily for us, we were able to hold our son in the first few hours of his life. Not immediately, but quicker than many of our fellow NICU parents. Granted, we had to deal with various wires, monitors, and machinery while doing so — our son's veins were tiny, and he spent a few days with an IV in his head that seemed particularly treacherous to us.

Both my husband and I found it nearly impossible to adequately explain what we were going through to our friends and family, and even three and a half years down the line it's still a challenge. My mother gave birth to three children before me who each spent time in the NICU before passing away, and my mother-in-law came to visit while our son was in the hospital so they can each understand a lot of it, but the rest of our family lives across the country and never saw anything that we went through. Making friends with other NICU parents is tricky — you're not really supposed to ask about one another's children because that violates patient rights, so you have to find something else to talk about. We have a few really amazing friends who have let us talk about the experience whenever we need to, and in our experiences we've found that the most random things — like a beep that sounds like a hospital monitor — will stir up memories and bring forth conversation. I'm glad that my husband and I had one another, because if anything we can discuss it between the two of us whenever we need to.

One of my son's conditions didn't present itself until he was around 18 months old and he wasn't officially diagnosed until a few months after his third birthday. It's not serious as far as the condition goes (many children have much more severe cases), and we were told well ahead of time it could develop, but it was still something that we were surprised by. It totally sucks watching your child for signs of phantom conditions that may or may not develop throughout his or her life — I get that. I spent MANY a day panicked that a particular glance or behavior on my son's part meant this or that medically-speaking, until my husband reminded that whatever happens in our lives, this is IT: the life we have. Knowing before it happens that your child may develop a disorder or illness or that he or she may have a harder time in life is rough, but if your child DOES develop something this is the road he or she has to take — and it's the road you'll share with them.

This mantra is also helpful when dealing with feelings of unfairness. As our son gets older and becomes more aware of what sets him apart from other kids developmentally (however mild the difference may be), the feelings can be almost overpowering. My only advice for this is to accept the feeling and release it — you can't do anything to change what your child has to deal with, but you can accept it and turn it into something great that can empower your child. We have a strict no-"I can't" policy in our house, and it's one we ALL stick to. We also tell him that everyone has some kind of challenge — maybe one part of his life is hard, but other parts are brilliant and he has a lot of talents and skills.

The guilt is the hardest part, and also the one I have basically no answer to. Even though we know that we couldn't have done anything differently to change our son's life, sometimes it still feels like we could have or should be trying to, and it fucking sucks. I can't tell you how many times I've over-analyzed the entire pregnancy and birth, looking for some kind of answer — but for what reason? Even if there WAS something we or I could have done differently, it's already been done. The past is the past, the present is now, and the future is yours for making as awesome as it can be for you AND your kidlet.

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  1. I totally understand… my son was born 10 weeks early and spent 11 weeks in the NICU getting bigger and getting over two issues as well (both life threatening but both beaten!)he is now 9 months old and a happy healthy guy:). Thank you so much for posting this and showing that our babies are perfect just the way they are and that everything happens for a reason.

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  2. These are the tough questions we're still dealing with. My twins were 13 wks early and had major complications. The guilt was the hardest. It took me a long time but I finally excepted that I did everything possible and what happened was out of my control. The guilt creeps back up every few months. Its usually triggered by bad specialist apts or major milestones. When this happens I try to focus on how far my kids have come and not on what they can't do.

    To keep family and friends aware of what's going on I update the Facebook page I. Created

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  3. You put it into words so perfectly…

    We found out at the 18 week gender scan that our baby had a serious medical condition that would have to be repaired soon after his birth. This also meant we would have to deliver by c-section at a specialty hospital 5 hours from home. Further testing revealed a genetic abnormality that can cause a spectrum of issues. We thankfully only spent a week in the NICU, but will spend the next several years looking for signs of developmental delays.

    There's nothing we could have done to prevent it, but it's still heartbreaking.

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  4. Sorry, I'm using my cell and its being all wonky. To finish my sentence …. I update the Facebook page I created while the kiddos were in the Nicu. Regular medical updates, status of how physical therapy is going, results of eye tests ect. When I start to get 'well intentioned' comments about things I post articles or blog posts that explain the issue better then me. Folks tell me they fond them useful because they have no previous experience with prematurity or its long term complications.

    We're 18 months out. And I can say it does get easier.

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  5. My son surprised us at his birth with a hand malformation, where he is missing all the fingers on his left hand and only has half a thumb. It took a while to sink in, because of all the things that could have (and did) go wrong that day, the hand thing seemed kind of minor. But, there's always the questions of why. I'm a research scientist and will always wonder, was it something I worked with, some chemical I introduced to his little growing body while he was inside me? I know that is isn't my fault and that I did everything I could to protect my baby. The feelings of uncertainty, guilt, and unfairness do get better, especially when I redirect my thoughts to the positive. It hurts because, as my husband said once, you want your child's life to be easier than yours, you hate to see them struggle. But,my son's almost 3 now and is such a beautifully happy child. I truly believe, because he's proven it so many times, that he can do anything. I don't know what he will face in life due to his differences, but we try to give him the love and support he needs to face the path that is ours to walk. And, like Cat and so many others know, we have an awesome life, because we make it so! Thanks, Cat, and everyone else who share all these things and remind us all to keep our heads up.

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  6. Note to self: Don't read posts like this at work because you WILL start sobbing.
    The line in this post that really struck me was this:
    my husband reminded that whatever happens in our lives, this is IT: the life we have.

    I wish we could all remember that better.

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  7. I can't speak for the parents, but from a relative's point of view, having something like a blog or simply regular facebook updates can be incredibly helpful to get a better idea of what is going on. It makes you feel much closer too.

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  8. My son spent a week in the NICU due breathing issues as soon as he was born. The week in the NICU was due to a per-cautionary measure of giving him a week of IV antibiotics. Turns out he never needed them. There was never anything wrong with him, he just stopped breathing from the strain of birth. So now even two years later, I'm still bitter about it. I know it was good "just in case" kind of thing but to have to see your son a day after you gave birth. To have to have the nurses tell you when you can hold YOUR OWN child. To find out they gave him formula because they couldn't wait until I was well enough to visit him the next day in the NICU. To have to take a parenting course in order for my son to be released to me when no one else leaving the hospital does is just awful and though my birth experience was great, my after days were a hot mess and I can't let go of some of that bitterness because I feel like they stole something from me that I cannot get back.

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    • Mandy-
      I understand your frustration with your NICU experience for something that was precautionary. But as someone who's child was in there for breathing issues (in addition to having Necrotizing Enterocolitis, google it if you like it's a nasty potentially fatal thing in babies) wouldn't you rather be safe than sorry when it comes to your child's heath and well-being?
      I'm sorry that you were unable to hold him when you wanted to and that he was given formula before you could see/feed him, however they were doing their jobs to make sure your son survived and thrived.
      Rather than feel slighted and upset that they took something away from you, why not look at the sweet wonderful child you have now and cherish him for who and what he is today, right now, this moment.
      The one thing I have learned as a mother, and especially a mother of a NICU preemie is that you live in the moment and cherish those. NOW is all we really have.

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  9. I know what you mean. My first daughter was 14 weeks early and the first time I got to hold her she was 2 weeks old. Granted at that point, I was scared to hold her even then. She was born 1 pound 11 ounces. She was in the NICU for 101 days. She is now 3 1/2 and the only problem she has now is a growth hormone defiecency. We got lucky there. My other daughter was born fine but she did develope an infection 24 hours after being born so she spent a week in the NICU. Luckily we still had a lot of the same people that we had with the first daughter. One thing that we now have in place at our hospitals, once a month a group gets together and has lunch. They are NICU gradutes and also people who are currently in the NICU. That way, there is support for the people there and who have been through it. They also have a facebook page. Its Holding Tiny Hands and there is tons of support. It started here in Iowa but I know its gone to other states at least for the facebook page.

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  10. Thank you very much for sharing your story Stephanie, I really appreciate being able to read about your perspective on this issue. It brought up some emotional stuff for me, as my twin brother and I were preemies too (we were born at 25 weeks). We spent the first three months of our lives in the NICU and I know that was a very difficult time for my parents, especially my mother.

    My brother has dealt with some serious complications due to our premature birth. He has cerebral palsy and is completely blind but even so, he brightens the day of everyone he meets. He is full of joie de vivre and has a great appreciation for the small things in life.

    As for me, being a preemie left me with slightly affected vision (which has gotten much better in recent months thanks to lots of energy healing work), other than that I am a typical 20-year-old. I am a French major in college, yoga teacher, and a singer and pianist as well.

    My parents have always been very open with me about the details of my early life, I've even seen pictures and video that were taken during my stay in the hospital. It's not something we talk about too much though, for multiple reasons. Firstly because it is a part of my past and I am very focused on living my life in this moment. And secondly, my mom still has guilt issues about the whole thing, so I don't want to bring up any emotions for her unnecessarily.

    Knowing about the challenges that I have had to overcome has been a very empowering experience for me.

    I believe that if I could survive that ordeal, than I can get through pretty much anything.

    • Dana! Thank YOU! I loved this especially: "Knowing about the challenges that I have had to overcome has been a very empowering experience for me."

      One day I would love to read about this from your perspective — how the challenges you faced helped you feel empowered, what your parents did and didn't do while you were growing up that aided these awesome feelings. I obviously have personal reasons for wanting to read your perspective, but I also think it'd be a valuable contribution to Offbeat Mama. If you're ever interested just let me know!

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  11. Hi Stephanie! 🙂
    I would love to submit a post about my experience! Thank you so much for your interest.

    Things are pretty crazy for me right now (fall semester just started) but I'll start working on something as soon as I have some time to myself.

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  12. I was born with heart and liver complications that kept me in intensive care until I was two months old, when they were properly diagnosed and started to resolve. I went into heart failure several times and my parents were told I would likely not make it, need several organ transplants or be sick and weak for the rest of my life. When my heart started growing, it started working again and I grew up very healthy.
    My parents have always been open with me about the fact I nearly died. They told me from a young age, firstly because I had to keep having check ups and I didn't understand why, and secondly because I could tell that something wasn't right about my newborn photos- people are crying and look tired and sad, and I'm covered in little wires and cords. There's no classic pictures of me wrapped up in my mother's arms, because they didn't have a chance. I was also upset when my little brothers had a big traditional christening party with food and presents and music, because when I asked about my party I found out I had a priest come to my bedside in the middle of the night when I was 10 days old and unlikely to make it to the morning. Honestly when I was five, I thought that was stupid and unfair.
    But when my Mama realised it really upset me she made my brothers' party mine too. A lot of guests didn't get it, but that wasn't an issue. I think every child really needs to hear the story of how they came into the world, and they need to hear it honestly. I was confused that telling my story used to make my mother cry- and she still cries every year on my birthday- but her absolute sharing let me know that we had all those precious first moments. They were just a bit different. The overwhelming love that surrounded my coming into the world still shines through.

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    • Thank you for this! I don't have a lot to add other than it's incredibly valuable to read. We're at a point where we're becoming more and more open about these details of our son's life with him — he's always wondering why he has to go to the doctor, or why he has to wear his bracelet, and so on.

      Thanks again. 🙂

  13. I could have written this. My son was born with a bunch of congenital heart defects (honestly, I don't even know how many because the list seemed to change every time a new doctor looked at his echocardiograms). I got to hold him for less than two minutes right after he was born, about ten minutes when he was three days old, then not again until he was two weeks old. For the next month, he was touchable only with nurse supervision and assistance. We read to him, sang to him, sat by his bed and talked about what we were reading or looking at online, had phone conversations right by his bed so he could hear both voices, and generally did whatever we could to be close to him while he was trapped in his nest of wires and tubes. Until his heart transplant at three months of age, he did not have a day without some kind of tube or something sticking out of him. The guilt is definitely major, but it's abstract since we have no genetic or environmental factors that definitively led to the defects. The only people I blame for any of his suffering (which is through; he is doing wonderfully despite all the drama) are doctors or nurses who made missteps or errors of some kind or another, but thankfully few of those were major. I sort of fear what this experience will mean for our relationship long-term, because at the end of the day, yes, he suffered the most, but damn did my husband and I have a crap time of things, too. I'm so scared that somewhere down the road I will resent my son for the hell we went through on his behalf, but I'm trying to recalibrate my heart and mind now so that never happens and we just continue to love and adore him without complication.

  14. I recently found out I was pregnant, and 5 months along. My first sonogram was a week after the date, and they found something wrong with one of the kidneys. I just saw a specialist a few days ago, and basically her kidney is holding fluid and unusable. The other one is fine. I will have to monitor her with regular sonograms to see if the kidney dies on its own, or if it will need to be removed surgically after birth. The doctor also warned that it could cause other issues and I may have to deliver early. I carry guilt, mainly around if I had known about the pregnancy earlier, I may have been able to prevent the complications. It is no where near as complicated as other baby's problems, but I am convinced I am meant to have this child and the universe will provide accordingly. It still hurts though.

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  15. My son was born at 27 weeks weighing 1lb4oz. He had 25% survival odds and we were told he would be severely handicapped. He would flatline multiple times a day – including the first time I saw him. I still have that image burned in my mind. I didn`t hold him for almost a month. He spent 105 days in the NICU.

    Nothing can prepare you for that. It reorganizes your life`s priorities in a heartbeat. For the better! It makes you realize just how precious and fragile life really is.

    The positive: I really cherish every moment with my son. I stopped getting upset about stupid details that get in the way of us enjoying what`s important. It`s really stupid all that we worry about in a day! I barely shrug when something I like breaks, a loved blouse is ruined, or the grocery store is out of my favorite foods. I`ve become a zillion times more zen about life.

    It`s been two years and I still have trouble hearing complaints from 'normal' moms. The one who cried her heart out at a nicu parent meeting because her daughter had jaundice and so she had to stay…overnight. I outright stopped talking in these meetings because it made the other parents feel guilty for complaining. No matter how I presented my son`s birth it sounds dramatic and disturbed everyone, and I hated the pity looks. I even hesitated a long time before writing this post because I hate the feeling I'm somehow belittling other parents` stories. That woman whose daughter stayed overnight – her suffering is as valid as mine.

    Pregnant friends complaining of their ugly swollen feet drove me inwardly bonkers. I would have given ANYTHING to reach 30 weeks!! Others bemoaning their homebirth that wasn`t 100% perfect. Such things made me soooo angry. I would nod politely and give a fake smile with a half-hearted 'at least he/she`s healthy'.

    On a bus I heard parents complain bitterly how they couldn`t find the right color stroller. I had just found out that day my son had cerebral palsy and might never walk. I still find it hard to empathize with 'normal' parents. I basically stopped caring about what people thought or trying to cushion their feelings. The awkward silence after I spoke of my son stopped bothering me.

    My son just turned 2.5 and I`m finally starting to be able to let go. I`ve started worrying about silly things like milestones and vegetables like other parents. After a year of therapy my son can walk perfectly normally thank you very much. He`s alert and bright, normal in every way and the center of our lives. Take THAT NICU doctor predictions!

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    • Just wanted to add – I`m eternally grateful for our modern medicine (and free healthcare) that gave my son life. I read too many stories on forums of preemie parents in poorer countries who lost their precious babies due to minor conditions, easily treated here. That I admit I have guilt over. Why did my son survive and not theirs? I have no answer.

    • You know… as a parent of a fellow preemie who has two lifelong medical conditions, and as a NICU volunteer, I just wanted to offer an alternative perspective to your last paragraph. I very seriously doubt that the NICU doctors were trying to discourage you when making their predictions — if anything, they may have been trying to tell you as early as possible about a few possibilities your child might have to contend with so you could bend your head around them as quickly as possible. At the time of your child's birth, the information you received was the most they could offer. I am almost positive that if you went to the same doctors and told them everything your child has overcome and is able to do, the doctors would be super thrilled for both of you. I can say from personal experience, I am nowhere near coming to terms or complete understanding of my own son's conditions, and we're learning new stuff about what they do and do not mean every time we visit one of his doctors — the information is always changing. He has so far surpassed their predictions in many areas of his life, but other areas he hasn't — and regardless, all of his doctors have been nothing be helpful, informative, polite, and supportive.

      I also think it's important to not compare your life with your child to someone else's — for the mom who is crying over jaundice and not seeing her child overnight, that shit was hard. She has no basis for comparison to what you have experienced, but everyone's personal definition of what is and isn't hard is different. I had to teach myself very early in my child's life to not compare my parenting experience to anyone else's, and that while I feel like I face a lot of parenting challenges that many parents don't have to, it doesn't mean that what other people are going through is any easier on them. Everyone's experience is relative, and that's something I'm still learning.

      I'm just offering this as a preemie parent, based on what works for me: I'm not an expert, and for all I know, it'll blow up in my face one day. I just personally feel that it's really easy for those of us who are parenting children with medical/developmental concerns, conditions, delays, and so on to kind of martyr ourselves so to speak, and I've never had a productive conversation with another parent or doctor once I've put myself in that position.

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