Can Parents Experience PTSD from Their Child’s Heart Condition? (Part 2)

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In our last blog post, we tackled an experience that most parents of children with serious heart conditions have probably faced—post-traumatic stress disorder (PTSD).

Many heart transplant parents are understandably consumed with being by their child’s bedside. But with that, they neglect themselves, even when they are showing clear signs of PTSD or extreme anxiety.

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Here’s why ignoring those signs is so dangerous: It increases the chance that these parents will slip into a funk that they can’t get out of. That could put the child’s health at risk, especially if, after they take the child home, parents are unable to stay on top of medications, doctors appointments, developmental milestones and finances.

But, there are several ways parents can prevent the stress of traumatic experiences with their child’s heart condition from developing into PTSD.

Here are 5 ways to address potential PTSD in yourself or your spouse if your child is grappling with a heart condition:

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There’s still a stigma around admitting that you could have a mental health issue. Many people regard it as a sign of weakness, even if it is not.

But you don’t have to prove that to anyone. If you’re front and center, helping your child get through a serious heart condition, no one can question your strength. It’s already obvious.

This is especially important for fathers. Dads of children who have been hospitalized in intensive care are more likely than moms to meet the criteria for PTSD 4 months later, according to a March 2009 study in the journal Psychosomatics.

If you are noticing signs of PTSD, consider at least meeting with a counselor. That way you can determine if further therapy is necessary.

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I’ve noticed that the stronger the support system parents have, the better they are able to handle the traumatic events that happen during their child’s heart condition. For one, they have more people they can tap for help with things like caring for other children, transportation and finances.

Also, if you decide therapy is best for your symptoms, support from loved ones can make that therapy more effective, according to the National Institutes of Mental Health.

Supportive loved ones can also help you identify and address triggers for PTSD symptoms.

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As a children’s hospital, we know that it’s not enough to just help the child. The parents and siblings are going through this, too. We have therapists on site who can treat family members who have PTSD.

Every hospital is different, but check with your child’s hospital about their on-site resources as well, especially if you’re spending a lot of time there while your child is in treatment. If they don’t have resources right at the hospital, ask if they can refer you to a mental health expert who is familiar with PTSD in pediatric heart patients and families.

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Many of our families are on the other side of the trauma. This means their children have experienced the worst of their heart conditions, and they’re now on the road to being healthy, active kids. When you ask their parents what got them through, many will point to their faith.

In addition to seeking counseling, practicing your faith—whether that’s prayer, meditation, reading your faith’s sacred texts or talking to your pastor—may help calm the stress response to your child’s ups and down.

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Remember that your own health is still important, too. Proper nutrition, adequate sleep and regular exercise are the best line of defense against most health conditions, including PTSD.

Even if your child is hospitalized, you, as the parent, have to find a way to take care of yourself. A journey this stressful means your body needs all the help it can get to stay healthy.

 

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

16 Responses to "Can Parents Experience PTSD from Their Child’s Heart Condition? (Part 2)"

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  1. Crystal

    January 7, 2015 at 11:24 pm

    I have a question.. I have for sometime thought that I have experienced symptoms of PTSD .. I have never gotten help and I do not have a good support system as I have a family who doesn’t seem to care what myself or children have gone through actually none even ever came to the hospital to see my son.. I have done it mostly alone all of these years (14) but is PTSD reversible after all of this time?

    Reply
    • Barb Roessner

      January 12, 2015 at 8:59 am

      Hi Crystal,
      Sorry for the delayed response, but I wanted to check with my colleagues on our psychology team. Dr. Sean Akers answers your questions below. I hope it’s helpful and that your symptoms are being managed

      In general, psychologists tend not to characterize issues such as PTSD as either reversible or irreversible. Instead we tend to look at an issues such as PTSD as treatable or manageable. For example, when treating an anxiety disorder, our goal is not to eliminate anxiety. Typically our goal is to work on ways to manage the anxiety. Similarly, PTSD is based on the experience of a traumatic event with the symptoms following the event. Treatment is focused on ways of managing the symptoms. Positively, there are treatments available and depending on types and severity of symptoms may include therapy, medication, or often both.

      Reply
    • Ben Federspiel

      January 21, 2015 at 11:38 am

      its very hard to deal with, especially when you have no support. I found my support through my Faith and a good friend 900 miles away. my Daughter spent 6 long months in Omaha . we went through hell just trying to get on the Heart Transplant list. after getting turned down we moved to Tn, hoping we would have better luck at Vanderbelt Medical Center. I lost my Daughter a week after we moved. Faith got me this far, yes its a hard rode watching our children go thru all of this.
      its even harder loosing the battle.

      Reply
      • Barb Roessner

        January 21, 2015 at 3:05 pm

        Hi, Ben. I don’t know the details of your daughter’s situation, but I’m so incredibly sorry to hear about what you’ve been through.

        Reply
      • Donna

        February 2, 2015 at 5:24 pm

        so sorry, Ben; beginning to wonder about these moves to TN; believe it or not, yours is not the first story I’ve heard like that – if can be any help, we’re just down the road

        Reply
  2. Brandon Kirk

    January 18, 2015 at 10:54 pm

    My wife and I just delivered our first child, a beautiful baby girl named Bailynn. Unfortunately, she suffers from Hypoplastic Left Heart Syndrome, and will have to undergo a series of 3 surgeries to correct the problem. My question has to do with the fact that we found out about her condition very early on in the pregnancy, and while we had a lot of time to mentally prepare ourselves for the challenges ahead, it has also been a very mentally and emotionally taxing ordeal. My fear is that even if my daughter pulls through without a problem, the damage may have already been done to me psychologically. I thought I was relatively strong in this area as I’ve dealt with watching my wife suffer with Parkinson’s and very painful neuropathy, and she’s just now 30. But watching what will probably be our only child fight for her life is either just on a completely different level, or maybe it’s the straw that broke the camel’s back. I don’t know which, but I do know that I am the one who has to be the strength for them both and have to be who cares for them both. Each day I feel closer to just crumbling. I really appreciate the article, all the knowledge I can get is infinitely more helpful.

    Reply
    • Barb Roessner

      January 21, 2015 at 1:44 pm

      Hi, Brandon. It’s difficult to read a story like yours and not feel at a loss. That’s exactly why I wrote this post——because there are people out there who feel like they’re crumbling, and of course it takes a toll mentally. Yes, your daughter’s diagnosis did impact you psychologically, but I’d suggest not focusing on whether the damage is done. The psychologist I work with, Dr. Sean Akers, refers to PTSD as something people have to learn to manage. That means there’s hope that your feelings of anxiety and emotional pain don’t have to control you. Given the pure amount of responsibility you’re carrying right now, I highly recommend finding a professional mental health counselor to talk to if you haven’t already. I’m not sure which hospital your daughter goes to, but ask if they can refer you to a social worker or psychologist who specializes in helping parents like you and your wife. Take care of yourself, so that you can be there for your wife and baby girl. I always think of the safety warnings we hear when we fly——the ones that say we have to put on our own oxygen mask so we can be there for those who need us.

      Reply
    • Linda

      June 30, 2015 at 7:54 am

      Hi Brandon,
      Like you, we found out about my son’s heart defect early in pregnancy. He also has HLHS. 17 years later, I finally went to a counselor at the urging of my family dr. who has been treating me for depression for several years. My counselor has been treating me for PTSD directly related to everything my son has been through. At this point I finally feel so much better. I thought I had put it all behind me but that wasn’t the case. My only regret is that I didn’t listen to my dr. sooner about getting help. Please don’t give up on yourself. Wishing you and your family all the best. Linda

      Reply
  3. Karla Sandoval

    February 10, 2015 at 12:42 am

    Hello,
    I would like to know if it’s possible for some signs of PTSD to be repressed for several years after the fact? My son had been doing really well, and hadn’t gotten really sick for a few years. Last week he got a virus and had a fever that soared to 104.9. I felt a stress that I hadn’t felt even with the last two surgeries. It was so bad that for the first time it manifested itself physically. Thank God my husband kicked into automatic, because I was unable to be productive enough to care for my child. He did get better, which in turn made me feel as though I had been catastrophizing the situation, but at the time I was unable to control the fear, and panic.

    Reply
    • Barb Roessner

      February 12, 2015 at 2:19 pm

      Hi Karla,

      Here’s what Dr. Sean Akers, a psychologist here at Children’s, had to say in response to your question:

      “Typically, symptoms of PTSD appear within the first 3 months of a trauma. However, there is evidence of what has been termed “delayed onset” or “delayed expression.” Typically delayed expression means that some symptoms are likely present early on, but the delay is in meeting the full criteria. Your case sounds more like symptom reoccurrence and intensification which is seen in response to reminders of the original trauma. The recent symptoms of anxiety, fear, and panic sounds related to your original experiences precipitated this time by the very high fever and illness which is scary to see in our children, even under less stressful circumstances.

      I’m glad to hear that your son got better. It may be helpful for you to see a psychologist who understands trauma-based therapy to explore some of these PTSD symptoms and panic.

      While the immediate stressor is improved, therapy tends to be more effective when working on issues in a proactive manner instead of waiting to see if they arise again or worsen depending on whether there are any other experiences that may give reminders of the original trauma.”

      Reply
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  5. Kathryn

    August 27, 2015 at 4:50 pm

    Hi, I have been diagnosed with PTSD after my sons two operations for a heart defect, one five days after birth and one at three months. I manage this with the help of my husband, parents and medication. There is a section of my extended family that thinks that I should be ‘fixed’ by now, I don’t believe that, I know that I will live with the memories forever it’s how I manage them that’s important. I don’t ask for special treatment only understanding, this article has helped me feel less alone. It’s not a weakness to feel fear it’s a weakness to hide from it.

    Reply
    • Barb Roessner

      August 31, 2015 at 11:13 am

      Thank you so much for sharing your experience, Kathryn.​ I’m glad that you found this post helpful. I think your statement about feeling fear rather than hiding from it truly shows your strength.

      Reply
  6. Jaymie

    May 20, 2016 at 11:46 pm

    Is it “normal” to still experience the symptoms of PTSD 1 1/2 years after all surgeries? Thanks!

    Reply
    • Barb Roessner

      June 14, 2016 at 1:43 pm

      There’s no limit to how long PTSD can last, Jaymie. But there are great techniques for coping with it, with the goal of decreasing those symptoms over time. Social workers and psychologists can help!

      Reply
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