Can Parents Experience PTSD from Their Child’s Heart Condition? (Part 1)

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When most people think of post-traumatic stress disorder (PTSD), they imagine military veterans returning home from combat. Soldiers have been so exposed to human tragedy, their minds become conditioned to fight or flee, and surprising things—a firework exploding, someone dropping a book on the bus—could transport them back to the battlefield without warning.

People with PTSD may have trouble sleeping and struggle with constant anxiety. They feel like they’re on alert every second and struggle with memories of the traumatic events that are vivid enough to feel as if they’re happening to them again, according to the U.S. Department of Veterans Affairs.

But PTSD doesn’t just affect veterans. It can develop in individuals who have experienced any type of trauma—including parents who are watching their children struggle with a serious heart condition.

No, they are not in the midst of violence. And no, they are not bearing the medical burden of the heart condition. But the parents feel the agony of their child’s illness as if they are going through it themselves. They may always fear a meeting with a doctor, having heard the worst there before. Or they might forever associate their child crying in the night with a moment when the disease was especially trying.

Honestly, I think all families of kids with heart conditions have PTSD to varying degrees.

Think about it: the official definition of PTSD from the American Psychiatric Association doesn’t only include those who experience the trauma, but also those who witness it.Omaha_PTSD_01 (1)

For families whose children have serious heart conditions, the parents’ stress level is high and rising all the time. We have cared for some families in which one or both of the parents sought treatment for PTSD. This usually happens during the waiting period: that time between being placed on the heart transplant list and actually getting a heart.

During that period, parents are on edge. They are constantly wondering when or if their child will receive a new heart in time. Then, they are faced with close calls that trigger their stress level to spike even higher, including:

Stroke

Kids with complex congenital heart conditions are at a higher risk of stroke. And not just 1 stroke, but they are at higher risk for recurrent strokes, according to a July 2012 study in the journal Annals of Neurology. Because their hearts are not functioning at their best, blockages can sometimes prevent blood from being pumped to the brain. Just like when anyone else has a stroke, this could cause serious disability or be life-threatening.

Cardiac arrest

Sudden cardiac arrest is a technical way of saying that the heart stops functioning. Congenital heart diseases—namely cardiomyopathy—are among the top reasons why children go into sudden cardiac arrest, according to a March 2012 study in the journal Pediatrics.

Extended waiting

Children listed for a heart transplant are more likely to pass away waiting than people waiting for any other type of solid organ transplant, according to a February 2009 study in the journal Circulation. As time goes by, the wait wears on parents, and it doesn’t get easier. That could be because one of the key risk factors for PTSD is feeling powerless, according to the U.S. Department of Veterans Affairs.

Then, there’s all the other complications that can happen. Some children have to have limbs amputated because of poor blood circulation. Some parents have literally watched their children stop breathing, turn blue and then had to entrust them to doctors and machines on faith that they’ll see them alive again.

For parents in any of these situations, when it’s a child—your child—you might as well be in the throes of a violent assault. The stress response is about the same.

Omaha_PTSD_02

I’ve only mentioned the medical complications. Let’s not forget about the strain on marriages, the financial burden that leads some families to bankruptcy and the issues that can arise with other children.

Why Addressing PTSD is So Important

The long-term issues of unchecked PTSD are serious, mainly because a prolonged fight or flight response is so taxing on the body.

Think about it: Your body is gearing up to protect itself from what it perceives to be an attack. The heart rate spikes to get more blood to your muscles, according to the National Alliance on Mental Illness.

Breathing speeds up, sometimes to the point of hyperventilating. Blood sugar spikes. If the body experiences this stress response too much, it could develop into long-term problems with high blood pressure.

In our next blog post, part 2, we’ll go through some concrete steps on how parents can address signs of PTSD.

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."

71 Responses to "Can Parents Experience PTSD from Their Child’s Heart Condition? (Part 1)"

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  1. Sarah Chessher

    June 3, 2014 at 12:02 pm

    Absolutely! My daughter had a transplant when she was 5. Before that it was ER visits, 911 calls, incidents of cardiac arrest and coughing up blood. I have had almost 7 years to adjust and my anxiety is lower than it has ever been since this whole ordeal began. However, I still have catastrophic predictions about seeing doctors (will it be something awful?) And when my other child needs some kind of minor medical care, I tend to freak. It’s as if I’m “used to it” with one child, but completely vulnerable with the other….if that makes sense. Thanks for posting 🙂

    Reply
    • Barb Roessner

      June 3, 2014 at 12:14 pm

      That makes perfect sense. And with all your family has been through congrats on getting some level of control over the anxiety. Hopefully our next post about how to deal with it will be helpful.

      Reply
  2. Pingback: Heart Dads and PTSD | Half Heart. Whole Life.

  3. Pingback: How do you know when it’s time for a second heart transplant? - smallbeats

  4. Renee Holton

    January 7, 2015 at 8:58 pm

    I have always thought the second most important part of being a parent is keeping your child safe. With the diagnosis of CCHD, it takes away your power to protect. The only thing left is to love them throughout their Quest of Heart. And love is the most important part of parenting.
    I know many of us stay up all night watching them breathing, waiting for the other shoe to drop.
    I was told Lancelot, my son, could die at any moment, and there was nothing anyone could do to help him. I was obsessed with finding out a surgery or therapy the doctors missed. All the while, Lancelot learned, grew and enjoyed life between Dr. Visits and incidents. He would have TIA’s, and 5 minutes later want to go to school.
    Needless to say, I finally stopped worrying, and started enjoying living like Lancelot.
    But I still have triggers, and Lancelot is 22, and could still die at any moment.
    Enjoy your article.

    Reply
    • Barb Roessner

      January 8, 2015 at 10:54 am

      That’s it: Stop worrying and start living. That’s very tough to do for heart families, and I applaud you for getting to that point, even as you still deal with the triggers.

      Reply
    • Claire Payne

      January 13, 2015 at 6:34 am

      This is my first visit to this site. I am surprised to see someone address the hardest, and I feel the most important issue, which is living the life you were given. It is a huge challenge when you believe if you don’t completely control everything with all your being something horrible could happen.

      Mastering the skill of living in between all the medical incidents and visits and treatments is a gift I wish I could give everyone and especially my baby (now 30 years old).

      Living in peace, controlling what you can and having a bit of faith when it comes to the things that are beyond your control is part of getting past the PTSD.

      All of my best,

      Claire

      Reply
    • Scaredsad mommy

      November 20, 2015 at 11:59 pm

      Feeling the same way frustrated n completely helpless trying to make it on faith but I’m falling apart! Need help no one to talk to.

      Reply
      • Barb Roessner

        December 1, 2015 at 10:19 am

        Hi, there! I’m so sorry to hear that you’re struggling. Please reach out to a behavorial health specialist and chaplain at your child’s hospital and connect with a social worker there as well. They can be your best resources during this time. Wishing you and your family the best!

        Reply
      • jade

        June 6, 2016 at 7:10 pm

        You are not alone. Trust me i know how you feel.i here if u wana chat x

        Reply
    • Aida

      February 15, 2017 at 3:18 pm

      Hi, just read your article…My son is 23 years old and just made it last year with two open heart surgery and a pacemaker.

      All this happened in four months as he got an infection and had to have a second surgery. I am so grateful he is alive, but I go through moments I am disoriented and vulnerable to the point I have to stop doing wherever I am doing to process the trauma and agony I feel about what he went through.

      I definitely feel symptoms of PSTD condition. Rush particularly affects me and I’d rather do things more slowly and calm. He is doing good so far and focusing his energies in being creative. He is a great paint artist. Good luck to you and your son.

      Aida

      Reply
  5. Brittany

    January 7, 2015 at 9:02 pm

    This totally hits home. As soon as our baby boy was diagnosed at 18 weeks gestation I shut down emotionally. He is now 3 and has had 2 open heart surgeries. The anxiety, the restless sleep and even mild depression are always wavering in my life. We lead a happy life but as I look back I can totally see some degree of PTSD. So glad someone is talking about it. Thank you.

    Reply
    • Barb Roessner

      January 8, 2015 at 10:39 am

      Brittany,
      No problem. Thanks for reading and helping to raise awareness.

      Reply
  6. stacy ballard

    January 8, 2015 at 2:47 am

    This is spot on, ive been diagnosed with ptsd over the past few months although everyone was telling me its depression (big difference!) Im in the uk and its sad we dont have the awareness of this kind of stuff over here like you do in the usa.
    Thank you for posting this, its helping me make people more aware.

    Reply
    • Barb Roessner

      January 8, 2015 at 10:33 am

      Stacy,
      Yes, depression and PTSD are totally different and require different steps for treatment. Even though many people aren’t aware of it in the UK, I hope you’ve been able to get help. Feel free to share this with others who need more information.

      Reply
  7. Jolene Kuty

    January 8, 2015 at 3:59 am

    As a chiropractor I’m at in the health care world daily, dealing with insurance, paun, and so on. But when my son was ill with severe sepsis, I had to act as patient advocate and doctor and the 24 hr circus of trying to keep him alive caused me to have PTSD. I think it is important to validate that it’s understandable and there are steps you can take because, for me, it has gotten so much better. Take care of your physical and mental health. Jolene Kuty, DC, your Scottsdale Chiropractor

    Reply
    • Barb Roessner

      January 8, 2015 at 10:32 am

      Jolene,
      You’re absolutely right, and I’m very sorry to hear about your son’s illness. You used a perfect description—24 hour circus. It doesn’t end and it’s definitely important to know that there are things parents can do to help with PTSD. I’m glad to hear you’re better. Thanks so much for reading

      Reply
  8. Meridee G

    January 8, 2015 at 11:43 am

    Thank you so much for posting this, I have always believed I suffer from PTSD. Our second born son passed away at 13 days with a rare condition called Chylothorax. When our 3rd son was born 1& 1/2 yrs later, he was diagnosed with a CHD. All along the way it has seemed to go really well for awhile, then worst case scenarios pop up. Needing balloon dilation urgently at 7 weeks, Ross procedure at 7 years old, some really great years of growing up, then about 4 years ago, at 14years old, we almost lost him to endocarditis. I remember them telling us to prepare ourselves for the worst. Once he was stabilized and recovered enough, (6 months) he had another OHS to replace the severely damaged valve. He is now 19 and referred to adult cardiology, but has been waiting almost a year for an MRI for follow up on Aortic root repair. This mother feels very helpless, and I am unable to feel relaxed, or feel that I can let go.

    Reply
    • Barb Roessner

      January 14, 2015 at 11:17 am

      Thanks for reading and sharing your story, Meridee. I’m so sorry for your loss, and I hope everything goes well for your 19-year-old.

      Have you spoken to a psychologist or social worker about what you’re going through? If you’re able to, I think the right person (who either specializes in PTSD or parents of kids’ with serious health conditions) could offer some good perspective and coping techniques. These are giant issues your family is facing, and you all shouldn’t have to face them alone.

      As a writer (in addition to PA), I can also attest that writing down your thoughts and feelings helps, too. Record your fears and frustrations, but also try to find at least one positive to write about each day.

      You may already know this, but remember: None of this is your fault. You want what is best for your son and are doing your best to make sure he gets the care he needs. That speaks volumes about your character and inner strength.

      Again, thanks for reading. Stay strong.

      Reply
  9. Pam Baldwin

    January 8, 2015 at 12:15 pm

    My son has had 2 transplants. Once as a child and then as an adult. And doing very well now. I never thought about it as PTSD but I look back and can see that, yep that emotional breakdown was probably that. But as an adult going through that process again, I think he could have very easily been going through PTSD also. Thank you for this article. Very enlightling.

    Reply
    • Barb Roessner

      January 14, 2015 at 11:22 am

      Thanks for reading, Pam. With two transplants under your belt, I’m not surprised that you and your son could be dealing with very real psychological effects. I hope you’re feeling more at peace with what you were/are experiencing.

      Reply
  10. Warwick Veck

    January 8, 2015 at 3:28 pm

    I think what might add to the stress for parents in America is the burden of paying for the child’s medical treatment. You don’t have a National Health Service as we in the UK have. Over here everything is free irrespective of your financial situation. Visits to doctors, hospital stays, consultants, surgery, ambulances, prescriptions, even hospital meals are free. So if your child is hospitalised in the UK you don’t have to check with your insurance company to see if they will cover the cost, you just know the child will get the best treatment available, and so will you if the worry makes you ill. We also have air Ambulances operated and piloted by fully qualified paramedics, which is a charity financed by public donations. I believe president Obama wanted to introduce a National Health Service in America but Congress opposed him

    Reply
    • Barb Roessner

      January 14, 2015 at 11:28 am

      Hi, Warwick——thanks for reading…and for the international perspective! I’m always amazed to find out how far this blog has reached. While many hospitals here in the US will provide care regardless of a patient’s insurance status, but you’re right——the cost of treating heart conditions is often a source of major stress for families. We do have healthcare reform now, called the Affordable Care Act, but the program is in its infancy and we’re not sure yet how exactly it will all pan out.

      Reply
    • Donna

      February 2, 2015 at 5:19 pm

      I’m glad to hear that parents there will get help for their worry but question, does that include medications or just counseling?

      Reply
  11. Amy

    January 8, 2015 at 10:15 pm

    I thought I just had severe post partem depression and anxiety, but ended up with a PTSD diagnosis which my family didn’t believe. “That’s what soldiers get.”, they said. Thank you for this. I hope it will help those families who don’t understand how any traumatic situation can cause this disorder. You’ve helped validate this diagnosis for me.

    Reply
    • Barb Roessner

      January 14, 2015 at 11:37 am

      Amy, I’m so glad to hear that this helped you in some way. I wanted to raise awareness about the fact that, like you said, any traumatic situation can have serious, long-lasting effects on people. PTSD is definitely not just reserved for soldiers. Feel free to print this out and pass it on to any family who didn’t believe your diagnosis…and stay strong!

      Reply
  12. Chris Kuhn

    January 9, 2015 at 6:13 pm

    My son Jason was born with tetralogy of fallot while he is not in need of a transplant he has had surgery to repair issues with his heart. Last year he suffered heart failure and was inches from death. I’ve been the strong one through this because I’ve had to be. Not to sound mean or anything but when he was a new born it really never hit me. Now he’s my little guy and I panic every time he coughs. I don’t know if it’s some technical termed disorder or just being a father who loves his son but every day is like walking on eggshells.

    Reply
    • Barb Roessner

      January 14, 2015 at 11:53 am

      Chris, I’m sorry to hear about Jason’s condition. We love our kids so much, which means that as parents, we’re particularly vulnerable to the traumas of our children. It’s so hard to see a child go through frightening episodes and be limited in what you can do to help or control the situation. I hope you know you’re not in this alone. Thank you for reading.

      Reply
  13. J Miller

    January 9, 2015 at 9:43 pm

    My son had 2 heart transplants. His first at age 2 then again shortly after his 18th birthday. In the beginning, there was lots of fear. My worst fear then was being left alone with him worrying what would I do if he arrested again? As time progressed and his health improved, the fear subsided. So much to the point I would want to attend his cardiac biopsies and caths as an observer. The opposite end of the spectrum became true. I also wanted to change my career to one in medicine. Of course that wasn’t practical since I needed to be there to provide financially as well as emotionally for him. I also wanted a sibling for him. We had a daughter 6 years after he was born. They were very close. Although they did the normal sibling fighting they truly were quite the pair. Unfortunately his good health started to fail when he was 16. I didn’t realize at the time the impact this had on his sister. We had become very used to his life as a heart transplant patient. As adults we could grasp that. As a child this opened up a lot of questions and worry. After several months of poor health it was determined another transplant would be necessary. Things seemed to improve after he received his “new,new” heart. Life returned to our normal. He improved so much he left for college 6 months post transplant. This was difficult for all of us. Although it was a good change it was full of excitement and worry. His luck changed for the worse and his new heart was not working properly. He came home from college urgently for a cath and angiogram. Unfortunately the news was devastating, his new heart was beyond repair, rejection had reared it’s ugly head. He never recovered from the procedures, and surgeries. He died 10 days after his 19th birthday. As parents we were beyond words but really had prepared in the back of our minds for this moment his entire life. His little sister was blind sided though. She was 13. That moment changed her life forever. She is now 18 and truly struggles with the impact her brothers death has had on her. We see psychiatrists and therapists but she struggles with depression and anxiety due to this very traumatic experience. I am hopeful with the appropriate help and interventions she will be able to deal with this loss and become a stronger young person despite the pain. Receiving appropriate mental health care is key to being a productive and happy individual. We are hopeful for her future as she continues on the path to acceptance and peace.

    Reply
    • Barb Roessner

      January 14, 2015 at 11:57 am

      J, thank you for sharing the story of your brave son and daughter. You’re right——the loss of a sibling is very difficult, especially at a young age. Your strength for your family, the hope you carry for the future, and your proactive search for counseling are wonderful beacons of light in a challenging situation. Thanks for reading and taking the time to share your situation. I’ll be thinking of your family.

      Reply
  14. Catherine Campbell

    January 10, 2015 at 7:40 am

    I loved this article. Thanks for writing it, I am looking forward to reading part 2! We are currently waiting for a new heart for my 3 yr old( she’s currently home) and I have many of these symptoms. As the latest example, Tuesday she needed lab work to be done and after 2 sticks of trying and failing Ayla had become hysterical and it brought back some bad memories and I couldn’t take it, I told them to stop trying and we will get her labs done another time and we left. I was trying not to burst into tears and run out of the hospital with her. Everytime my phone rings and I see it’s the hospital number I go on a panic attack in just a few seconds. I look forward to your next article 🙂

    Reply
  15. Krista Corbett

    January 12, 2015 at 5:25 am

    our daughter was diagnosed with Leukemia at age 2.5. In a moment we flew four hours from home and didn’t return for the better part of 8 months. Her treatment was 2.5 years long. Even off treatment, we have checkups every 4 weeks. There is no doubt in my mind that my husband and I have it do experience all of the symptoms mentioned.

    Reply
    • Barb Roessner

      January 14, 2015 at 12:01 pm

      Krista——Yes, seeing your daughter sick and fighting through treatment for 2.5 years definitely takes a toll. That’s a long time! Thanks for reading and sharing your story. I’ll be thinking of your family…here’s to clean check ups into the future!

      Reply
  16. Victoria Mills

    January 13, 2015 at 12:24 am

    My daughter Abigail was born on September 29, 2014 at 3:16 am and a few hours later after a pediatrician did an exam on her and this is when my life got turned upside down. My little baby girl was sent to the NICU and I had to be separated from my baby girl. A cardiologist met with me a few hours later after she was sent to the NICU and told me what was wrong with my daughter’s heart. They had to put her on oxygen and give her medication. She was born with a PDA and she had 4 holes in her heart and she had pulmonary hypertension. A day before Christmas her Cardiologist called me to tell me that the doctors up in Stanford (Palo Alto, CA) would like to move forward to fix my daughter’s heart. Abby had many follow-up appointments with her Cardiologist and during her last exam; her doctor explained what would happen during the surgery. This is when I fell apart at the seams. Just hearing that she’d be put on a by-pass machine while they work on her heart really frightened me, hearing about the doctors bringing body temper back up to warm, really scared me. I hope I can be strong for my Abby. Every time she coughs I start to worry about her. My grandmother died of Congestive Heart Failure and towards the end of her life she coughed a lot before she passed away. I guess that’s what PTSD does to you. Events that have happened in the past can resurface due to current situations like my daughter’s heart problem. I thought I was depressed, but I bounce back and I’m ok, but I usually fall apart whenever we have to go see her doctor and now we are planning on taking our daughter off to surgery in less than 30 days. What if something bad happens during surgery is at the top of all of my worrying as her mother…

    Reply
    • Barb Roessner

      January 14, 2015 at 1:24 pm

      Victoria, thank for you for reading and sharing about your daughter. You’re experiencing difficulties that no parent wants to face, but many do. Have you talked to a therapist or someone at the hospital who works with parents and can offer you some coping techniques? No matter what, please know that you’re not alone. I’m thinking of you and your daughter in the coming days leading up to her surgery.

      Reply
  17. Kourtney Rice

    January 22, 2015 at 5:05 am

    Thank you for writing something that resonates so close to a parent of a heart baby. Our son was born with transposition of the great arteries along with right ventricular stenosis. He was supposed to have an open heart surgery at one month, 6 months and 3 years. We are fortunate that he was able to get away without having surgery at one month and had two procedures ( a Bi-directional Glenn and Damus Kaye Stansel) done at 5 months. He ended up with kidney strain, extremely high blood pressure and pneumonia in the ICU while recovering from his open heart. Watching my baby stop breathing, turn blue and then be re-intubated and sedated was the most terrifying and surreal experience of my life. Spending so much time in intensive care really wears on parents and while the majority of the fear is due to the fact it’s your own child at risk, it’s also hard being around other vulnerable babies/children. I witnessed a 5 week old baby girl pass away next to our son’s bed and I still feel like I’m grieving her death. During our hospital stays I felt so strong for our family; I also felt positive that he was going to be alright. He’s now 19 months and doing great. He still needs his next open heart surgery (the Fontan) at around age 3 and most days I don’t think about it.However, I have noticed that in the last year I get random rushes of anxiety in my chest, severe flashbacks and will tear up over small things (I can’t even watch commercials of babies in the ICU).

    Reply
    • Barb Roessner

      January 22, 2015 at 11:36 am

      Thanks for reading and sharing your story, Kourtney. I love hearing that heart kids are doing well.

      This is an important issue for heart parents, mainly because they have to focus so much of their energy on their children. Even though your son is doing well, you guys went through a fight. I’m glad that you’ve noticed your anxiety and what triggers it. I’d encourage you to speak with your doctor or the mental health team at your child’s hospital if you feel like it’s becoming overwhelming.

      Talking to someone about what you’re going through can help you stay strong for your son. He may be young, but your strength and optimism were probably a source of hope for him during such a scary time in your lives.

      Reply
  18. Rob Raycraft

    January 29, 2015 at 11:56 am

    Thank you Barb for bringing this to light.
    Our 8 year old son is HLHS. I can tell you without a doubt I have undiagnosed PTSD from our journey. I am retired military and a 19 year veteran police officer. I teach a course talking about the ANS and PNS system in the body. I know what PTSD is and what it can do. If I could add its important for parents to figure out what their “triggers” are. It has taken me a while to figure this out but I am a much better person and parent for this. A mild trigger for me is the smell of hand sanitizer and a major one is traumatic children calls at work. It’s important for parents to realize that this is completely natural to An extent and the more they can control the triggers the more they can control their lives. Thank you for this article and bringing it to light for other parents that may be suffering the same trials and do not know anything about PTSD.

    Rob R. Illinois

    Reply
  19. Charlie

    January 30, 2015 at 2:04 pm

    My wife brought her son into this world at the age of 18 and without knowing of his HLHS. He was air lifted at 24-26 hours old. She had no idea what was wrong with him; she was just told he was sick. His condition was not found during her pregnancy. Her experience from what she thought was going to be a normal pregnancy and birth turned into a nightmare in an instant. I was not with my wife at that time. We became a couple after his 2nd surgery. I was with them during his 3rd and experienced the fear for myself first hand. And being the “step-father” at that time (although we were not married) was hard to deal with on top of everything else. After his 3 successful surgeries, we were on to living our happy life. He is doing fantastic by the way. We became a family of 3 and adjusted our lives to suit our son. We both finished college and began our careers. Once we felt we had a hold of live we were going to expand our family. We both agreed that we would try to get pregnant and so we began that process. I never felt the magic of trying and questioned my wife several times, to ensure she was on the same page. Six months went by and we were still not pregnant. Then the conversation about the fear of having another baby like before scared her to where she wanted to stop trying until she found it in herself to try again. I understood her concern and fear and gave her time. Then further talk led into the question of “what if I can’t get over the fear and do not want to bear another child?” My first emotions were selfishness and anger. I was asked if I would still be with her if that was her decision. I want to be a family. I want children of my own. We wanted children of our own. I have always dreamed of having children of my own and getting to experience God’s gift from day 1 until my dying day. I feel like I will never be able to have that since she cannot get past the fear of the unknown. I came across this article while searching for answers. I am curious if others have experienced this before and how they handled it. Is there a way she will ever get over the fear? I did read J Miller’s article above, which I hope someday happiness reached their younger one again. It made me think of all the what if’s that can occur, yet I still have the same emotions of wanting children or just 1 child of my own. I love my stepson with all my heart and see him as my own. I just wish and pray that she and I can experience the greatest gift of life together.

    Sincerely,
    Step father of one

    Reply
  20. Zach

    June 13, 2015 at 11:04 pm

    My son was born with AV Canal, which was repaired at 6 months, but developed sub aortic stenosis and had surgery to repair that when he was 3. He is now 9 and facing a third surgery in 2 days as the sub aortic stenosis returned. It was not expected to so it was a shock. He is strong, energetic and overall healthy, but also faces developmental and some other minor health challenges due to having Down syndrome. He is a happy and enthusiastic kid. This third surgery is so much harder than the others and I am convinced I am dealing with PTSD as I have been experiencing many physical symptoms of anxiety (pain, numbness, etc.). I am terrified of this surgery and it was what I dreaded the most of all we deal with. His mother and I divorced after the second surgery and also have an older 23 year old son. We work well together for our sons, but the intensity of these experiences is too much at times. I have not found good support from the Down syndrome community as few have experienced this many heart surgeries (and most only deal with them at a very young age) and I think they are afraid of this. I do gave a wonderful network of family and friends, but I can barely stand the thought of all my sweet boy will go through in the weeks ahead. I have to remain strong for him and the anxiety I am experiencing make being able to do that challenging. Thank you for creating this blog to share our experiences.

    Reply
    • Barb Roessner

      June 15, 2015 at 12:32 pm

      Thank you so much for sharing your story, Zach. I’m so sorry for what you’re going through.

      I applaud you for staying strong for your son. I think the fact that you have such strong emotions about what he has gone through (and what he may continue to go through) is a sign that you truly and deeply love him.

      If you are having a hard time finding support or assistance, I encourage you to reach out to someone at your son’s hospital (like a social worker). They may be able to connect you with the right resources.

      Reply
  21. Pingback: Treating PTSD In Heart Kids And Their Families - smallbeats

  22. Jeni

    June 30, 2015 at 11:54 am

    I’ve watched my daughter turn blue in from of me and had to grab a fellow to help us.

    You don’t let go off stuff like that. I’m amazed at how emotions can overtake you suddenly and you’re in tears for no good reason. I am always on edge and waiting for the bottom to drop out–because well it has many times. 🙁

    Reply
  23. Gil Wernovsky, MD

    June 30, 2015 at 8:50 pm

    Beautifully written and spot on!

    Gil Wernovsky, MD
    Medical Director of Patient and Family Centered Care
    Nicklaus Children’s Hospital
    Miami, FL

    Reply
  24. Dawn Silverman

    June 30, 2015 at 10:22 pm

    I think that this article is a bit misleading. To say, “Honestly, I think all families of kids with heart conditions have PTSD to varying degrees.” You either have PTSD or you don’t… There’s not varying degrees, and it’s always dangerous to generalize to a whole population. There are four “clusters” of symptom-types and you must have at least one (sometimes more than one) symptom from each cluster for at least a month. Plus, these symptoms must seriously affect one’s ability to function socially and occupationally.

    Sorry, as a licensed mental health counselor and heart mom (my son has HLHS), this is a pet peeve of mine. We just had a long discussion about this at the MLH conference. So many heart parents are confused about this mental disorder and think they have it because they may experience a symptom or two. I still encourage parents to seek professional help if they are feeling distressed or very anxious, but there is a difference between having some flashbacks or fearing a doctors appointment and suffering from a diagnosable mental disorder. As heart parents, as with any individual, we need to be careful about using labels — unfortunately, it becomes easy to use them as a crutch, and then we get in our own way of moving forward on an emotional level. Just some food for thought.

    Reply
    • Barb Roessner

      July 1, 2015 at 11:11 am

      These are valid points. Thank you for your input, Dawn.

      At the end of the day, even if a parent is not struggling with PTSD it’s about making sure people get proper help and support when they need it.

      Reply
  25. Kat McManus

    July 2, 2015 at 9:53 pm

    Because her husband couldn’t make it,I went with my daughter to her OB appt. to find out boy or girl! During sonogram we were exciting chatting about how to surprise her husband with the news that he will have a son to go along with his precious daughter(3yrs.) when the Dr. Came in she said he may have a club foot. My daughter looked at me confused & I quickly made the comment that that’s ok, it can be fixed. Then the proverbial 2nd shoe hit the floor… Heart defects, extremely rare, discuss further in Drs. office…I watched my daughter shut down. It was too much for her to process. I remember thinking that I had to stay focused on everything being said from chromosome testing on her to those done on baby. Her (CHD-Taussig Bing Anomaly) baby boy was safe while in utero but once out of womb only educated guesses could be made. My grandson has had 2 surgeries with only one more whenever his body shows the signs it’s time. After that a heart transplant is all that can be done. I promised my daughter I would be there for her. Now My blessings from Making that commitment : my greatest joy is on Mon. & Fri. ( I take care of them while Mom works) when I walk through the door on those mornings….in the most excited high pitched joyful voices ever-I am greeted!! Sweetest times ever!! It has taken 2 yrs. to allow myself (the grandmother!) to relax a bit & make plans beyond the present time -even out of town once!

    Reply
    • Barb Roessner

      July 6, 2015 at 10:40 am

      Good for you, Kat! Obviously, the support of your daughter and your grandson has made quite an impact. Feeling supported can make such a difference. Thank you for sharing your story.

      Reply
  26. Jennifer P

    July 3, 2015 at 6:59 am

    This was confirming to read. I participated in a study post stroke which was post heart transplant via CHD. At the end of the study, they called to tell me I had anxiety. I almost laughed out loud. Did they have any idea what we had been through with 3 months in the hospital and every complication possible? Of course I have anxiety. Like many things in life, you can’t be totally prepared for what comes next. It is rewarding but also very hard. Thanks for the article.

    Reply
    • Barb Roessner

      July 6, 2015 at 10:40 am

      Glad you enjoyed the post, Jennifer. Thank you for reading!

      Reply
  27. Willow

    August 19, 2015 at 11:33 am

    I’ve had 7 years of intense stress after my baby boy had meningoencephalitis & myocarditis, many complications, two 9 month stays in Hosp & a heart transplant just before he turned 6. I’ve had a lot of therapy for PTSD & anxiety. The nightmares still occur regularly & I struggle with groups of people.

    Reply
    • Barb Roessner

      August 20, 2015 at 3:03 pm

      ​I’m sorry to hear that you’re struggling, Willow. I’m glad that you’ve sought help through therapy, and I encourage you to continue to seek support for any challenges you may still be having difficulty with.​

      Reply
  28. LM

    August 20, 2015 at 4:17 pm

    Thank you for this well-written, insightful article. I was formerly diagnosed by a psychiatrist with complex PTSD approximately six months following the birth of my daughter with congenital heart defects. During her time in NICU, I was encouraged to seek therapy as a preventative measure and I am so glad I did. She is ten now. While reading I found myself feeling alright until I saw the word “stroke” on the screen, then the words went blurry. My friends and family have never really understood. I hear things like “it’s been so long since that happened, you need to stop dwelling on it”. We’re waiting for a surgery date and every time I hear my phone ring, my body freezes in fear it’s the clinic but also with hope it is the clinic. I’d add, too, this affects siblings. Two of my children (her older sisters) are in grief therapy for handling their feelings of what it has been like growing up with a chronically, potentially terminally, ill sibling. I’d encourage anyone who has a child with CHD and has other kids to get them involved in counseling programs as well. It wasn’t until after my two older children went to a camp for kids with grief issues that I fully realized how deeply they are affected by their sisters’ illnesses.

    Reply
    • Barb Roessner

      August 20, 2015 at 4:49 pm

      I’m so glad you found the post useful. You’re so right about siblings and how growing up with a chronically ill sibling can truly impact their lives as well. I’m glad to hear that your children have found support because that is so very important. Thank you for sharing your story.

      Reply
  29. Rebecca

    December 1, 2015 at 3:33 am

    This is a great article. My son was diagnosed in utero with simple TGA and after the stress of his birth and surgery and recovery died down, I was diagnosed with PTSD, which was good (in a way), as it helped me to understand why I was feeling the way I was. One thing I think is worth adding to the list of stressors that might contribute are the horrible things you witness in NICU. I saw babies slowly dying, mothers expressing milk day and night because it was the only thing they could do to feel useful and families grieving after the loss of their babies. That definitely contributed to my experience… Though we haven’t had to go through organ transplants, and I can’t imagine how intense that would be!

    Reply
    • Barb Roessner

      December 1, 2015 at 10:09 am

      Hi, Rebecca! Glad you enjoyed the post. And yes, I agree. It’s definitely hard to see these things happen in the NICU. That experience can be very intense and disheartening. I’m glad you were able to reach out and find the help and support that you needed. Thanks for your comment.

      Reply
  30. Nancy Costanzo

    December 27, 2015 at 5:45 am

    I have often told people that I was my mother’s greatest blessing and her worst nightmare. I am 62 years old with ALCAPA which was not correctly diagnosed until 2 years ago. However, my parents knew I had a CHD from the time I was a baby due to multiple heart failure. The mystery of my exact diagnosis definitely resulted in PTSD for my mom. She lived in tremendous fear that I would die suddenly. It was the NOT knowing that caused enormous pressure. Your article speaks to my family in many ways.

    Reply
    • Barb Roessner

      January 5, 2016 at 1:20 pm

      Hi Nancy. Thank you for reading and taking the time to share your story. Knowing something isn’t right but not knowing the exact diagnosis can definitely be scary for heart kids and their parents, so I’m glad you were finally able to get diagnosed after all these years.

      Reply
  31. Caitlin Veitz

    December 27, 2015 at 9:29 am

    I feel this is the hardest part for outsiders who feel like insiders to understand.
    My daughter has a complete case of Pentalogy of Cantrell. Her heart and liver were on the outside of her body during development and at birth. I opted to send her straight to surgery. She was intubated, I never heard her cry, and and did not hold her not knowing if I’d ever hold her alive. My husband was on a flight to the city she was born because we hadn’t planned on her coming early. We live 8 hours from Rochester, MN and he works another 4 hours away from home.

    We thought the hardest was over when she made it past day 3 as 90 percent ectopia cordis babies by then (usually without medical intervention). She was 10 days old when her pulmonary artery rubbed against a suture. It was 2 am. There were 8 inches of snow on the ground. We got a call saying we should get to the hospital as soon as we could because they didn’t think she would make it through the night.

    I know she is a “healthy,” happy almost 10 month old. I see it every day. I live it every day. But I feel sometimes people who think they care and love so much that we don’t understand and appreciate how much they do realize that you can hear about the battle and you can try and put yourself in those shoes but you aren’t the soldier. I could never say I know what it’s like to fight combat or terrorism simply by knowing a veteran. I don’t understand how people can live vicariously through someone and truly feel they too know it like you do.

    I know people realize who really has done the hard work, however, it’s difficult when people close to your husband and child don’t recognize just what you, your husband, and child went through or why you are the way you are after having gone through this. It makes me push them away and accept those who I feel get that they don’t get it. I feel less anxious around these people. I feel more accepted by these people.

    Reply
    • Barb Roessner

      January 5, 2016 at 1:20 pm

      Hi Caitlin. Thank you for reading and taking the time to share your experience. I see where you’re coming from when you say that people who haven’t gone through what you’ve gone through may not fully grasp what it’s like to see your child struggle to survive at such a young age. But, as Dr. Akers (a psychologist here at Children’s) mentions in a different post, sometimes people who say “I know how you feel” really do have good intentions–they just don’t know how to put them into words. I’m glad your daughter is doing well now and wish you the best going forward.

      Reply
  32. Gina

    December 28, 2015 at 2:41 am

    Reading several posts, I find I relate to so many. My son is now 9. Diagnosed at 3 days (yes it was mussed inutero) with a severe case of HLHS. We were thrust into a world we did not know. Nine years late, 4 open heart surgeries, mutiple heart caths, close to 200 Echos and this mom watches hey boy play his 3 third year of baseball and second of basketball. Finding the balance and the line of quality vs quantity. I watch him run with friends. I worry constantly. I wonder whwn the next shoe will drop. I too experience PTSD, the beeps of machines, the hand wash soap. Or the brand of the coffee stand in the hospital. I find myself frozen in place panting. But I breathe my way out of it. Lo e your babies no matter how long they are supposed to be here. They our ours til God calls them home.

    Reply
    • Barb Roessner

      January 5, 2016 at 1:21 pm

      Hi, Gina. Thank you for taking the time to read and share your thoughts. As you said, having a child with a heart condition may mean living with a level of uncertainty, and that uncertainty may make you worry about what could happen next. But I also think you’ve hit the nail on the head about quality vs. quantity when it comes to your heart kiddo’s progress and experiences.

      Reply
  33. Stephanie Ann

    August 7, 2016 at 1:25 pm

    My son was born with critical CHD. He has had 25 surgeries and interventional caths in his lifetime. He also has other severe life threatening diagnoses and he has been through alot. Lung hemorrhages, arrests, heart tx discussions, status seizures, MCA infarct stroke, et al. and serious abuse from his father. Although I understand how someone might have PTSD from the medical (it’s common for CHD Warriors themselves) I think I avoided it by being hands on with him 24/7 for 195,000 blessed hours. I’m so grateful for every day I can’t afford to emotionally be “stuck”. He has written about his experiences (I have posted one to my Linkedin) and he uses alot of humor. It’s so important to never lose your sense of humor! He is on over 40 different meds a day and a virus like RSV is devastating but still we have to get back up and keep moving forward, even on oxygen. If there is PTSD it’s been from nasty family comments and their negative behavior and knowing there isn’t anyone to trust but his excellent medical team. So much is out of our control as parents but how we deal with stress doesn’t have to be out of control. My son’s father didn’t have positive coping skills and it made it extremely difficult for everyone else. Unless you have been a parent to a medically complex child, and even then journeys are so different, it is difficult to understand how we do get through our days as caregivers with abundant joy. I tell all new parents of medically fragile children I meet, rest when tired, eat when hungry but drink tons of water and exercise. Healthy habits go a long way when under extreme stress! Zakki is 22.

    Reply
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  37. Kelly

    February 17, 2017 at 9:03 pm

    My son was diagnosed at 3 years old with his CHD. I was 6 months pregnant at the time of his diagnosis and 2 months later and 8 months pregnant we found ourselves in Omaha for his OHS. It has been almost 3 years now and I still feel guilt every single day. Things like how my stress levels could have affected my unborn child or if I was strong enough for my son during his struggle since I was nearing the end of a difficult pregnancy. My son is now 6 and doing amazing! I was wondering if there is any correlation with heart kids and behavioral issues? He is incredibly smart and at the top of his class but he struggles to stay focused, on task, and to choose appropriate behaviors at school.

    Reply
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