Saturday, August 29, 2009

Were you traumatized by the NICU?

That's the subject of a New York Times article I just found out about, a piece that talks about the effects of having a child in the NICU. According to a new Stanford University study, parents of preemies in prolonged intensive care are themselves at risk of developing post traumatic stress disorder—a mental illness typically associated with soldiers returning home from war.

Max was in the NICU for two weeks (that's him toward the end of his stay, above); having an infant in the NICU for months on end seems like a whole other ring of hell. My heart goes out to any of you who went through that. I can still picture my little Max lying in the incubator, hooked up to a million tubes. He looked so pink and so perfect, it was hard to reconcile that with the fact that he had extensive brain damage.

I'm past the trauma of the NICU...mostly. It'll always be there, tucked away in my psyche, but the reality of Max has helped heal me.


  1. As all of us would be, I was in complete shock when Violet went into NICU at birth.

    It was a whole new world for us, a world no parent should have to endure.

    They gave me a diary to write down thoughts and feelings and now to read these today, brings back all the bad memories. Of course the best one was being able to go home evetually!

    I still remember the day as if it was only yesterday, even after 4 years have now passed.

  2. I can't even imagine the trauma of it all. We went home fat, dumb and happy, thinking we'd had an uneventful experience. We didn't start getting the "creeping diagnoses of concern" for a few months after the blessed event.

    I've got to say, I have nothing but admiration for all our sisters who have endured such a profound shock and fright. They ought to teach Bedside Manner 101 in the medical schools, too--some of those 'diagnosticians' can be cold on a good day. On top of all the equipment and harsh lighting and bad news, that has to be frightening as all get-out.

    1. Sisters, really, just sisters? I'll have you know I experienced just as much trauma, hence, why I ended up here on this page via keyword search. How dare you!

      A father with a B.A. in Sociology (therefore, understands and sympathizes with feminism)

  3. Yes. But not by NICU. Our hell was PICU. I actually liked NICU because we had one really good (caring) neonatologist. Then we were sent to the floor, and then home only to return 2 days later and remain in PICU for 4 months, where we were badgered every day to put in a trach and told (well, it felt like) repeatedly what terrible parents we were for not obeying without questioning.
    Whew. See? Still a lot of anger there. And every time I'm told she'll go to PICU after a surgery, I have a meltdown. Just those 4 letters makes me cry hysterically. Hopefully someday I can get through that.

  4. Yes, I am traumatized from my NICU experience and like you said, it will always be a part of me. I had flashbacks for a full year, and when Noah needed to follow up w/a geneticist at the same hospital, the smells sent me reeling.
    Noah was only in the NICU for 5 days, but it was 5 days of being told my son had a brain injury, possibly a metabolic issue, was having seizures, bad news hurled at us day after day. There were no windows in the NICU or the room they let us stay in adjoining it- it was a total nightmare that I have thankfully woken up from but will never ever forget.

  5. My labor was 36 hours and as soon as the baby was born, she was taken away from me and brought a different hospital to prep for emergency surgery. My husband had to go with the baby and all the doctors and nurses left to fill out paperwork. I was literally all alone in the delvery room for about 30 mins after I gave birth (she was also 4 weeks premature so none of my family had time to fly out to be with me). It was extrememly traumatizing at the time becuase we were told during my entire pregnancy that we were going to have a perfectly healthy baby. The first time I really got to see me baby was when she was in the NICU. She was hooked up to all these tubes and wires with an IV in her tiny little head.

  6. Teddy too was in the NICU for only 5 days, but then was in the hospital 12 more times before he was 4 months old. I didn't feel like I had time or energy to be upset about it all until he was 6 months old & I went back to work--at the hospital most of this happened at! The first time I walked down the hall where the mom's rooms are, seeing all the people who didn't have any problems, I had to hide in the bathroom & cry for awhile. It was a couple months before I could walk down that hall without feeling my stomach drop out of my body.
    Time, & a major remodelling of that hallway, have helped a lot. But yes, the memories are always there, & they sometimes bubble up when I least expect it.

  7. My son was whisked away immediately after he was born to the NICU and spent 5 days there. It was heartbreaking leaving the hospital without him the first time.
    I got over the trauma of it as well, and I know that 5 days isn't that much compared to some of the infants that had been in there for months. But it was hard nonetheless. and little did we know what would be in store for our son and our family once we left. a different world!

  8. I think I was numb a lot of the time - like a robot that just functioned. I know I asked every single day if it was my fault. And every single day they said no. I'm still not sure I believe them. I took a thousand pictures, decorated his isolette and dressed him in his own clothes. I needed to do that to feel "normal". Here are pictures if you want to see:

    When I got home, I kind of lost it. I constantly checked on him. I was sure he was going to die in the night. I would talk to dead relatives day and night - pleaded with them to pull strings in heaven so God would heal Gavin. I was in full Post Partum Depression. It was rough. I now volunteer as a parent counselor in the same NICU where Gavin spent his first month. No one helped me...the volunteers never came by. I'm determined to be there for another Mom.

    And that's all I have to say about that.

  9. I just did a post about our NICU stay on my blog.

    I had a completely normal pregnancy with no issues. Then Emily wasn't breathing when she was born. She started having seizures and ended up spending 6 weeks in the NICU.

    I got to spend about 10 minutes with her before she was taken across town to the Children's Hospital. My doctor let me go see her and then come back to the hospital to be discharged the next day. I can still remember walking in that NICU for the first time. It was completely overwhelming. I was not prepared for it at all!

    I was numb for the first 3 weeks. I really didn't know how to process it all. Looking back now, I know I should have talked about it more - instead I kept it inside. That was a disaster waiting to happen! Not a good way to handle things!

    It is now almost 2 years later and I think I am still trying to process all that happened then. It isn't as fresh, but there is still some healing to be done.

  10. My sons are 18 now so I've had plenty of time to reconcile it all. It sucks to have your baby taken away and go home only with a breast pump! Many of us pulled ourselves up after even a C-section and crawled back to the hospital right away to see our babies. I think sometimes we are considered "over protective" parents early on when many don't realize how hard it is to get over seeing your child on life support. I will never forget the moment I got my first baby home and I was in charge!!! My experience was positive in the NICU but one thing I always wonder to this day, it sure seemed like my babies just slept in the NICU. When I finally got my twins home they didn't seem to sleep as much???

  11. These comments are so moving. I also had a very normal pregnancy. The moment when Max was whisked away to the NICU was upsetting, but it's hard to remember just how much so in retrospect, given how devastating everything that followed was(seizures, realizing he'd had a stroke and might be very disabled) turned out to be. I was also numb the whole time, except when I cried.

    We've all come a long way. And I'm sure many of you must feel the same way I do: I am so much stronger than I ever knew I could be.

  12. YES! Definitely traumatized by the NICU. Ashlea was in there for almost 5 months. I had PTSD type flashbacks for a year and then got quite depressed.
    It is now 3 1/2 years later and I no longer have flashbacks, but I have not forgotten what it was like. I will never forget.

  13. My daughter was my first baby. Born at 30 weeks and weighing only 3lb 2oz, she stayed for 40 days. The imagine of my tiny baby laying there with tubes and wires still bothers my husband and I. The memories of coming home and having no baby to hold. I shivers to this day. I can only say that going every day to the NICU was such a blessing and that the nurses have my undying gratitude.My daughter is ten years old and I still hug her tight when I think of how she came into this world.
    xoxox Mckenna's Mommy

  14. Yes I was in shock she was my third child and full term I had no idea kids could be born so ill. My daughter is four now and I can now tell the story of her birth a little easier. The doctors didn't know if she would make it for months they thought she would need oxygen for years, Luckily they were wrong about some of those things she did make it and only needed o2 for 14 months not years. But in the NICU she had a stroke, blood clots and more. The doctors put her in a coma for like the first week so all her little body could do was breath and expand her lungs it was scariest time of my life.

    But time certainly helps doesn't it. I'm so happy she made it.

  15. I can't saythat I am traumatized by the NICU, Elizabeth was in the NICU for almost 4 mths. There were days of shear hell and not knowing if she would come home and it killed me everyday to go home without my baby. What kept me going was our time together, I read to her, sang to her and we did kangaroo care when she was stable.
    What traumatized me more was when she came home and her delay's became apparent. It was like a sucker punch, daily in the NICU I was told that she would be okay when she came home. No one ever mentioned extreme oral aversions, reflux from hell, her hearing impairment, sensory difficulties, social impairments and a disability different from what we were warned about. I felt ill prepared and without support when all these issues arose.
    What I really enjoyed in the article was Abby highlighting that a preemies life does not end when they are discharged the battles continue at home and often without support. The media frequently portrays unscathed preemies and rarely mention the difficulties that they face when they come home. You can check out Abby's daughter's blog through mine, click on Hallie.
    I do find myself as the article mentions ready for battle, when Elizabeth gets sick I think the worst, it is getting better as she is getting older but I still have a disaster plan planned out in my head when she sniffles.

  16. I think we were DEFINITELY traumatized by the ICU--we were actually in CVICU which is just for kids wiht heart issues.

    I'd been cut open. I'd never touched me child and he was on this big scary machine that made him swell up like a balloon. That was hard. But harder still was when we left ICU and I was giving bolus tube feeds every three hours AND have someone check vitals every twelve AND evening weigh-in AND trying to pump AND round AND residents. It's crappy and you're never sleeping more that two hours a time tops. Sounds like a recipe for PTSD to me.

    Like you, I'm a lot better now, but that wasn't easy.

  17. I never even thought of that. My grandson I now have custody of was in NICU for 2 weeks as a month premature baby. During those two weeks he would stop breathing. I remember my daughter calling me at work one day and saying, "mom, I don't want you to freak out when you see him. They couldn't put the needle anywhere else so it's in the side of his head." Yet one more IV or something-those days are a blur now.
    Now when he cries and he does the strong cry where they are silent turning beet red gearing up for a loud yell, I have a fit saying don't make him cry like that! He may stop breathing!." He's 4 and has long since been given an all clear. I never thought of me.

  18. We spent two weeks in the NICU. I am glad I had a journal with me to vent into. It helped so much. Having a sick child is bad, but having a sick child and being awash with postpartum hormones is exponentially worse. I had a normal pregnancy and more than routine prenatal care. No one saw it coming.

    I have not opened that journal since I closed it almost five years ago. I don't know when I will want to look back onto that time of our lives.

  19. Well, we lived in the NICU for 6 months, and I held Regan for the first time after 3 months. It was tough, but since she was my first, I really knew no different. I think If I would have had a typical pregnancy before hand I would be a lot more traumatized comparing the two. Instead I handled like I do everything...take it as it comes, and do your best with it.

  20. My son did 8 weeks in ICU (he was too sick for the NICU) when he was born. I remember the social worker telling me that I was at risk for PTSD.

    I think I've fared pretty well. It's been 6 years, I can go back and visit the ICU and chat with nurses and I'm fine. What really gets me, is when I'm visiting Children's hospital and I hear a Helicopter landing on the roof. I get anxious and shaky and cry uncontrollably. Ok so maybe I didn't fare too well.

    glad to have found you (can't recall how exactly that happened)

  21. the epilepsy unit did me in!! I felt like I was going to faint several times

  22. I believe that I did experience some PTSD after my first son was in the NICU for his first six days of life, and in the PSHU (Pediatric Surgical Heart Unit) for the remaining 3+ months of his life. It was so incredibly stressful, and usually, I am a writer, but I could just not write much at all during those almost four months. It was a few months after he died that I started having major anxiety attacks, etc.

  23. They took my daughter to the NICU the day she was supposed to come home. They claimed she had Neonatal Addiction Syndrome although I had never done drugs and the only narcotics I had were the ones the hospital gave me. She had a perfect APGAR score and was 10 lbs 2 oz. So no not really much of a sign of a drug addicted baby. I was so confused and they put her on methadone without our consent claiming they found narcotics (duh, they gave me Demerol all during labor) and marijuana (not even possible). She was there for a week and we asked to take her to another hospital. We were threatened with arrest and CPS and told we would go to prison for kidnapping (our own child, who they kidnapped). Security was cruel and called us junkies and losers although we were clean living Buddhists. They put us through hell and I've never been the same. I still have nightmares and I have panic attacks when I pass the place she was held. I am afraid to say it depresses me still or CPS will try to take my kids again. We have a clean house and we are straight edge but still it bothers me.


Thanks for sharing!

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