Mother Talkers

PTSD for parents?

Sun Apr 27, 2008 at 08:12:46 PM PDT

Life is back to normal. Blissfully, thankfully, mundanely normal. But 7 months ago, our sweet 15 month old girl went from being diagnosed with stomach flu one day to a trip to the ER with concerns about dehydration the next. After several hours of trying to figure out why she wasn't improving, one doctor finally suggested it could be sepsis and all hell broke loose. Luckily we were at the ER at Children's Hospital. She was upstairs in the pediatric ICU on a ventilator with a central line and all manner of monitors within 30 minutes. Meanwhile, her confused parents who had been pushed to the waiting room sat there thinking WTF?!? Those first couple of days were the worst days of my entire life.

My baby almost died, but she didn't. The doctors and nurses all said that her infection was caught in the nick of time and she recovered. She (we) spent 3 weeks in ICU, then 2 more in a regular room, then another 6 weeks with home health IV meds. Now, she's a very chatty and happy 22 month old who is back in school and seems to remember nothing of her ordeal. If only her parents could be so lucky...

Intellectually, we know we're fortunate, that we dodged a bullet, and that her infection was a totally freak thing that isn't likely to be repeated.  Sepsis itself is extremely rare, but the type she had is even more unusual. We just had really REALLY bad luck. And then good luck that it was caught just in time. She has a few minor and not very noticeable cosmetic issues to remind us of how fragile life is. I pray that they won't be too distressing to her as she grows up.  

Do we really have PTSD? Probably not. It's not interfering with work or love or life. Much. There's just a lurking thought always in the back of my mind, a vision of my baby in the PICU, and a fear that something else could sneak up on us (on her) again. I know that all parents worry about the possibility that bad things could happen to their kids, but I think this is beyond that typical fear.  

Most of the time, DH and I function just fine and can almost forget what we've been through. We work, we eat, we go to the park, we travel, we watch elmo videos, and we shower our daughter with even more love than we did before all this happened. We haven't sought any professional help to deal with the aftermath of this trauma. Part of me wonders if we should leave well enough alone, since life seems to be moving along fine without the help of a therapist.  Why muck around back in that horrible time when we can just enjoy now? But then again, here I am dwelling again. I've tried to find resources for people like us, but have hit dead ends. There are all kinds of support groups for families of kids with chronic illnesses, and resources for dealing with the loss of a child. For survivors of a really close call, I have not found anything. I'm not sure what I'm exactly looking for...self help books are usually too cheesy for my taste anyway. Still, I keep thinking that maybe some book exists out there that would speak to our situation.  I welcome suggestions.

One thing we have done is to get more involved in efforts to promote universal health care. My DD had the very best care available and we have good insurance. Luckily we did not have to hesitate about going to the ER for fear of the costs. All families should have the care we did.

Should parents like us just thank our lucky stars and move on, knowing that many parents suffer so much more than we have? And, beyond our particular situation, surely there are many parents who have dealt with trauma of one form or another and then moved on.  How do all of you deal with the normal anxieties and occasional larger traumas that come with the parenting territory?

Tags: ICU, sepsis, PTSD, parental anxiety (all tags)

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  • i think (0 / 0)

    i think that you are well within the parameters of benefiting from some basic counseling to process this trauma. i cannot even imagine. but i can sense that you could easily carry around a sense of foreboding - enough to write about it here. try not to compare your experiences with those of other parents. if it was tramuatic to YOU and it would help to work through it with someone, then i think that is a smart move for you in your life. and that is what is important.

    so glad your baby is ok, and that you are on the processing end of this.

    We cannot defend freedom abroad by deserting it at home. - E.R. Murrow

    by lorin on Sun Apr 27, 2008 at 08:18:30 PM PDT

    • Emergency workers and health care (0 / 0)

      providers undergo "debriefing".  Maybe after a traumatic parenting experience, a similar session could help.

      I've never thought about it.  I know there are a lot of support groups for those dealing with chronic illness, and a lot of these people benefit from counseling, but there's a very different emphasis.

  • Your fears are legitimate (0 / 0)

    Even though your daughter is fine and everything turned out for the best, the idea that it was so close to "might not" is haunting.  My son was born 12 weeks early and in the NICU for 10 weeks.  I was so busy during that time trying to figure out how to be a mom under those circumstances, and holding myself up and being positive for my baby and my family that I didn't have a lot of time to think.  I also looked around the NICU and felt so lucky as the days passed and we were more and more assured that our baby would come home with us, and be healthy.

    But when one of the doctors who gave me a post-natal checkup suggested I could have a mild case of PTSD, it didn't sound crazy to me.  I'd never thought of it, but it made a lot of sense.  As the doc explained, you don't have to actually experience the worst to have those feelings.  Getting close to the bad situation can be enough.  So don't minimize your feelings about what happened.  You can thank your lucky stars and move on, but still seek some guidance to get you through it.  I'm not sure what is scarier than getting even within a breath of the possibility of losing one of our children. It's definitely not to be taken lightly.

    I don't know of any books, but a few sessions with a counselor really helped me.  Just to be able to tell the story to someone who wasn't involved, who I didn't have to be strong for, and who would support my progress in processing the experience was really helpful.

  • Find someone to talk with about this (0 / 0)

    my dd had a febrile seizure last January, stopped breathing and (for all intents and purposes) died in my arms while I was shrieking at a 911 operator.  Luckily, I managed to do the rescue breathing thing and she came back just as the EMTs arrived.  She was fine, but I was a wreck and did a bit of couch time with a wonderful shrink in order to come to terms with it.  The thing that the shrink kept telling me was that any trauma is a lot like birth and the need to tell the story over and over (which may seem grim and ghoulish and just a bit masturbatory) is actually the same.  We make meaning of trauma and come to terms with it that way- and we need safe folks who can listen to us and love us through it, even if we have to pay them for the privilege.  It reminded me of my mom's need to tell the story of how I almost ended up with a trache tube in 1973, when she was all alone with me at the hospital and they thought I was going to die.  I'm way past 3 now, but she still needs to tell that story once in a while.  Be gentle with yourself and try to look with soft eyes at your needs right now- you'll be fragile for a lot longer than she was.

    • My son had two febrile seizures (0 / 0)

      at around 18 months.  It was scary as hell.  

      The funny thing was that when we started talking about it we found that it was really not that uncommon at all and that everyone knew someone who had a child who had had one.   This was our third child and we thought we'd seen it all.  

      "As God is my witness, I thought turkeys could fly"

      by lonestar canuck on Mon Apr 28, 2008 at 09:25:12 AM PDT

      [ Parent ]

    • My brother had febrile seizures (0 / 0)

      from the time he was about two until he was about five.  Only when running a fever, ofcourse.  It was freaky, though, because he'd often have the seizure before you realized he was sick.  

  • OMG, amazing you should post about this (0 / 0)

    I have been wondering whether I have  parental PTSD myself. DS was severely jaundiced when he was born and doctors refused to treat him, so he ended up dehydrated in the ER. Not as bad as your situation, but we went though 4 days of hell trying to wake him and feed him, worrying that he would die or suffer irreversible organ damage.

    DD's jaundice brought back all those feelings of fear and frustration and helplessness and anger, and I have been really, really on edge. It's partially the baby blues and lack of sleep, but I realized how much that anxious time affected both DH and I.

    I think the only solution, for me, anyway, is talk-therapy and time.

    DD's crying again, I want to write more, but I must run the feed the hungry angry baby!

  • agreed (0 / 0)

    I'll agree with the above and say that yeah, it does sound like you're still having some difficulty in processing what happened. Lord knows I would too.

    I come from a family of social workers, psychiatrists and psychologists, so my family bias is that seeking professional help for mental health issues is totally, absolutely normal and healthy. If you feel like you could benefit from a debrief/a few sessions/someone to talk to, you probably would benefit from it. Why not try asking your GP if they have any recommendations? Better to seek the help, resolve the narrative in your head and be able to move on, IMHO.

    Hugs to you - sounds like you, DH and DD are all tough survivors!

  • sessions (0 / 0)

    I think a few sessions of talk therapy would help you so much.  It sounds like you are already so in touch with your feelings on the whole thing, which is great, but I bet with just a few sessions you would really be on your way to a more full healing about the whole thing.

  • I don't think it's strange at all to (0 / 0)

    feel the way you do.  I agree that talking to someone about it is probably the best course of action.  Best of luck.

    "As God is my witness, I thought turkeys could fly"

    by lonestar canuck on Mon Apr 28, 2008 at 09:25:57 AM PDT

  • Understandable (0 / 0)

    I have not been through anything so bad as far as family member health.  And I don't have any reaction like PSTD, but I have had a hard time processing the aftermath of some stuff that happened.  

    While I was pregnant, our apartment building where we had lived was burned and we had to relocate, while I was working 12-hr days.  We had insurance, but we were without our stuff for 2 months, had to live in a hotel, etc.  The Red Cross was helpful for a few days, then dumped us because we had insurance.  I knew I needed to get some help, but since they wouldn't help us the prospect of searching through my insurance was too daunting at the time.

    Then when DS was born there was the whole imbroglio with CPS, that was incredibly truamatic and I'm not over it all.  I would just be hit with flashes of sadness and guilt and fear that they would take him away again.  And when he was in the hospital to have surgery for his pyloric stenosis, I cried pretty much the whole time.  I couldn't handle the fact that these doctors and nurses were being nice to us when six weeks earlier the folks at the same hospital were lying to us and treating us like criminals.

    Looking back I think there are some things that are really hard about difficult experiences, and others that were peculiar to the position we were in.  In any crisis, you get too busy just surviving, getting through each moment, to really deal with your feelings.  That's unavoidable, but I think it's imporant to take the time to grieve, debrief, etc.  And it may take a long time.  Certainly the experience will continue to affect you.

    I think it can be easier to weather a crisis when you have a support system, but even if you have family and friends nearby, it seems to take effort just to figure out when and how to ask for help, what to ask for, etc.  And you often can't really open up about your feelings to people involved, so therapy is good for that.

  • Honestly? (0 / 0)

    Should parents like us just thank our lucky stars and move on, knowing that many parents suffer so much more than we have?

    Yes. Thank your lucky stars, get some therapy, and move forward. I live with my son's chronic illness everyday so I will never get the P in the PTSD! I thank our lucky stars that he is a stable as he is because there are a lot of kids out there way worse than he. Yet, we live with the risk of sepsis killing him EVERY DAY. It's not a good way to live but its the only way we have so we deal with it. However, what I would give to be able to have your luxury of looking back and moving on.

    That said, every family has a 'story' and each one is legitimate. From broken bones to heart defects (Anu, how's it going????), each is scary and devastating. So, get some help to 'get over it' and go hug your healthy child.

    Oh, I heard a great quote on  NPR the other day from the woman who wrote Chocolat...she said that no one tells you that when you become a parent you will, from that moment on, be afraid. No one tells  you that fear is a huge part of parenting. (I'm paraphrasing - she said it way better and with a cool French accent). She is so right.

  • thanks! (0 / 0)

    I really appreciate the support and suggestions and I think you all are probably right about therapy.  I've been before and am all for it in principle, but for some reason haven't taken that step yet this time.  But we'll explore it.  I read in an Anne Lamott book (sorry, I've long since forgotten which one) that being a parent is like living with a loaded gun pointed at your head at all times.  I could relate to that before my daughter's illness, but of course much more since.  The part of the story that I omitted is that while she seems healthy and back to normal for now, she's (we're) not 100% out of the woods.  Her illness took a toll on her body that she has healed from for now, but that could have long term implications.  She's being followed by several specialists, and will still have some tests now and then. But...nobody's kids are guaranteed, right?  We all have to figure out how to live with that.  I guess we're just in the process of moving from trauma to post-trauma and part of that is just convincing ourselves that there's not really an immediate threat (though it feels like there is).  

    But, Gigi, I hear you.  And you are exactly the type of parent I'm thinking about when I berate myself for being a whiner!

    • By all means search out (0 / 0)

      support for parents dealing with ongoing/chronic health problems.  As crazy as it sounds, just talking to others who can relate to what you're going through is a tremendous help.

    • You are NOT a whiner! (0 / 0)

      And, I'm sorry if that's what I implied. Also, knowing that something could go "wrong" with her at any moment is indeed awful and does not allow you, either, to move to the P column of PTSD. Waiting for that other shoe to drop is almost worse than when it actually does.

      I don't know how my DH and I deal with the stress of it all. I guess we've internalized it and it has become part and parcel of our parenting/parenthood. We have not sought therapy nor every considered it. Indeed, the only time I contemplated therapy was to learn how to deal with my very emotionally high maintenance DD! LOL. If you think therapy will help, go for it. At least you might find some coping skills to help with the "future worry" that parents of ill (or in your case, potentially ill) children tend to do.

      Also, if you want to email me off line with your DD's "condition" I can help you find on-line resources - I'm great at that!!! duncjill at fuse dot net

      • OT (0 / 0)

        Did's Sam's cold improve to the point where you avoided the hospital?  Hope so.

        • Yes/no (0 / 0)

          He went in for a hearing test (he's been on some abx that can cause deafnesss...nice) and the audiologist diagnosed an ear infection. So, he's at home on 10 days of I.V. antibiotics. At least it kept us out of the hospital!

          Thanks for asking.

          • good to hear (0 / 0)

            I know it must be tiring to be spending so much time on nursing care.  But I'm glad you're not in the hospital.

            Thanks for the suggestion about the egg-crate bedding for the hospital.  I'm debating whether it's worth the expense as I don't really have space to store it and we're obviously not in and out like you guys are.  Maybe I'll bring a couple of comforters and use one as a pad?

            If you have any tips on how to monitor effectively (not mousy and not aggressive) I'd appreciate hearing them.  Do you ask the doctor directly what the orders are and then just make sure the nurses follow them?  I am mostly worried because of scare stories about serious rx errors.  I expect DH might be on an abx due to the surgical wound (?) and some painkillers, so nothing complex or heavy duty.  

  • What is PTSD? (0 / 0)

    In pure biological terms, our best understanding of what PTSD is is now that experiences don't get correctly processed into long term memory. When we experience something, it sits in the hippocampus while it's experienced, then gets filtered into long term memory. If something is still relevant - it needs to be accessed quickly because it's part of our current experiences - it doesn't migrate out, it just sits there for easy access. It's part of your fight or flight response - the more vivid and real the recent experience in your mind, the better able you'll be to use that experience to survive. At least if you're a hunter-gatherer. Eventually, though, when it's no longer immediately relevant, this experience gets processed into long term memory, and cleared out of the hyppocampus, and you move on with your life.
    That's how it's supposed to work, anyway. With PTSD, an experience is so traumatic that the body is fooled into thinking it remains relevant. The experience never gets processed into long term memory. It was too fast, too extreme, too emotional, and the body didn't have the opportunity to fully analyse what was happening and understand it, so the experience just stays in the hyppocampus, vivid, real, current, always there for immediate access if your mind thinks something related to it is happening. And because it's in the hyppocampus, it's not experienced as a memory. It's experienced as current. Actually happening again, not as something previous but as something you're experiencing today.
    So if something happens that causes your brain to relate that experience to now, that's when you get the hallmarks of PTSD - flashbacks are of course the best known aspect of this, but they're not the only one (nor even required for "true" PTSD). Other things to look for is your fight or flight response being set off - adrenaline jumps, your heart pounds in your chest, you sweat, your body feels ready to run or fight. Memory things can be another good indicator - do you smell the scents from the time, see the colors, feel the touch on your skin of an object from the time?
    PTSD can be treated - the reason counseling works is that it allows those memories still stuck in the hyppocampus to be worked through slowly, at a pace where your brain can deal with them properly, and as you do that, they get processed into long term memory. The memories don't go, they're just filed away correctly. There are also some promising drug treatments currently being tested.
    If the above sounds like it could be you, I'd urge you to seek counseling because this isn't just something you get over - it's a problem with a way your brain processed an experience, and you need professional help to fix that. Your experience could absolutely be enough to create this problem. Even if you don't have "true" PTSD, it can't hurt to talk to someone to check it out and deal with your feelings.

    "You're never more alone than when you're alone in a crowd."

    by Expat Briton on Tue Apr 29, 2008 at 07:26:16 AM PDT

    • What a useful and thoughtful comment. (0 / 0)

      I agree with all above that getting counseling would be extremely helpful in sorting through a traumatic experience whether PTSD or not.

      I think that it is  completely understandable that processing an experience where you believe your child's life is at extreme risk constitutes a trauma.

      I have older children, but this past fall experienced a situation that took me several days/weeks to process.  Late at night my dh and I rec'd a phone call from our 21 year old son who had been in a very severe car accident and was hundreds of miles away from us.  He was on the side of the freeway waiting for help for over 2 hours in the dark in a location well-known for extreme violence.

      No police help ever arrived - even though my ds called 911 moments after the crash; the other people  involved in the crash left when they learned my son had called the police; which left him to wait alone for a tow truck or other help with unknown injuries.  All the while my dh and I tried to keep contact with him by cell phone, but his batteries were slowly dying and he was becoming more and more afraid and concerned about his predicament.  It was a very very long night.  He finally was able to get towed to an auto body shop nearby - but still in a volatile area of LA - with little money and no place to go after that.  We were able to "wire" him money via online banking, the tow truck driver stayed with him until he was able to get a cab that took him to the LA airport after stopping for money at an ATM -- He then slept (kind of) on the floor of an airport terminal from about 2:30am till about 5Am when he was able to book a flight to return to San Diego.  The car had been completely totaled.   Even typing this floods me with how very thin the line is that we all walk - parent or not; every day.

      I have had other intense experiences with my kids, but this one left me shaken for a long time --- even now when I know he will drive a long distance I get a fear response.

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