I came across this article written by Barb Roessner.  For awhile I was starting to think I was just crazy or weak.  PTSD : post traumatic stress disorder is real.

Living in the hospital with my daughter for close to almost a year and a half, was very hard.  Always wondering and worrying with fear, no privacy and being closed in.  All my freedom was taken away. After writing that sentence, all I feel is guilt.  Oh my Lord, how my daughter must have felt.  As a parent, I had to be the strong one for Lauren.  I had to keep a smile on my face with tears from inside.  When she was feeling down, I would do something crazy, like just break out in a dance just to try to make her laugh.  She would say to me “your nuts mom”.  Now when I think of it, I guess I was nuts.  I was trying to cope with our situation also.

This picture was taken when we were watching a patriot’s football game.  I was rubbing Lauren’s feet to make her more comfortable, and I was wearing my Patriot’s hat.

Living Life

PTSD is so real.  There is not, one day that I do not have a flash back or memory though about what has happened.  Some people say to me, you need to move forward.  I am, but the memories do not go away.  I guess I’m always afraid of going back.

To this day I still have a hard time going to a store, I can only stay in there for a short period of time, then I start to have anxiety, I do not like to be in close places anymore.  Also, I have a hard time leaving my house.  My house is my security.  When I am home all is well.  I know with time, it will get better but that saying “NO PLACE LIKE HOME” is so true.

Can Parents Experience PTSD from Their Child’s Heart Condition?
Written by: Barb Roessner

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.

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.

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.

This article is so true.

If you know someone who is in this situation please pass this on.  They are not alone.

Lynne