Archive for April, 2010

A Study on the Stress of CHD Families….or You are Not Alone Part II

If you missed the first part of this short series on the emotional toll of having a child with CHD, you can read it here.

Where Parent’s May Look for Relief

This interesting article goes on to state that the early days of learning of the diagnosis are often very stressful on the families, especially the caregiver.  The doctor’s conducting this study explain that “The initial stage of diagnosis is a time when there is a lack of information and a groping for the characteristics of the illness.”  This initial stage of a lack of information leads to a search for resources and support.  Families will look for all information available from medical professionals, books, social support groups, and while not mentioned specifically in the article, I would like to add online information.

Additionally, the study found that a large number of these families turned to religion for support.  Religion can offer emotional relief as well as a hope in a higher power which may be able to help heal a child.

Lastly, the parents will look to other patients or caregivers of patients.  This step appears to help in easing the stress and emotional upheaval.  Finding out what to expect, how to care, where to seek care, and how a CHD has affected others is often an important activity for CHD parents.  One mother said, “I think other patients’ experiences are the most directly relevant.”

Maintaining Family Function

Researchers found that all families attempt to create a normal family and home environment where children, heart children and siblings alike, can grow up step-by-step and still maintain other family functions.  This process involves reframing or redefining the meaning of the illness, Unifying the family as they come to terms with the process and prepare for surgery, and nurturing normality.

When families have a baby with CHD, they must reframe the illness in their mind to take on some kind of meaning.  The majority of participants in this study reframed the illness by assigning a higher value on life.  Parents admitted that having a critically ill child that faced open heart surgery created a sense that life was more meaningful.  One mother put it beautifully when she stated, “I feel this is one of the most significant things that’s ever happened to us, even more than our marriage (laughter). I do think he has helped us to grow inside, because we hadn’t met any life and death issue up
to now. So, he gave us a chance to face such an issue. And he is such an endearing baby to us. Since the time I gave birth, we’re inseparable.”  Many families are cemented together through the trials faced with a CHD baby.

This uniting extends to the entire family.  The family of the CHD baby understands that their position as support to each other is important.  Spouses generally become more concerned for each other and even siblings showed great concern over each other and the child facing an upcoming surgery.

Lastly, it appears that heart families have a tendency to nurture normality.  Many families actually “forgot” about the heart condition during normal day-to-day activities.  They tend to have a desire to encourage activity with those outside the CHD world and they have a desire to raise their child normally.


This article, in discussing the ramifications of their findings, corroborated the findings of Jeffers, a researcher and cardiologist in the field.  Jeffers stated that  “He discovered that holding the concept of ‘it will be better’ is a great support during the decision-making process.”

The article ends by stressing that:

“When a family is confronted with a child with CHD having a need to              undergo heart surgery, the whole family is facing a stressful decision-making process. According to the results of this study, it is obvious that the caregiver and their whole family experience psychological distress, role re-organization and remodelling of their family functioning.”

Because of this it is suggested that families with a newly diagnosed CHD baby should be offered emotional support, information on what to expect and how to treat the baby, and a strong social support system for both emotional needs and medical needs.

Shu-Fan, Lan, Mu Pei-Fan, and Hsieh Kai-Sheng. “Maternal experiences making a decision about heart surgery for their young children with congenital heart disease.” Journal of Clinical Nursing 16.12 (2007): 2323-2330. Academic Search Premier. EBSCO. Web. 26 Feb. 2010.


April 27, 2010 at 3:45 am Leave a comment

Hands That Lift

I just returned from a luncheon.  It was a luncheon specially for heart moms.  It was put on by Intermountain Healing Hearts (IHH).  The emotions of the afternoon are still swirling around, filling my heart and head with thoughts and feelings I haven’t felt in a long time.  I had never attended an event with other heart moms….little lone 200 of them in one room.  From the first moment of walking through the door and taking my seat I was amazed at some of the other mothers I met.  I met two sisters, one who had a heart condition herself, but both having children with heart defects as well.


I met a mother who had lost a baby to Tetralogy of Fallot with Pulmonary Atresia.  This is the same condition as my daughter, only she doesn’t have Pulmonary Atresia.  This mother’s heart journey does not end there.  She had a second child with Tetralogy of Fallot who was a two-year-old who had a successful correction at four months.  This mother is pregnant with her fourth child, who also has Tetralogy of Fallot.


I listened to Margaret Cardall, mother to award winning musician Paul Cardall who was born 37 years ago with Tricuspid Atresia.  together they have undergone numerous surgeries, including a heart transplant only months ago and multiple life threatening experiences.  She spoke so beautifully, and right to my soul.  She explained that it is alright to feel tired.  She hit the nail on the head when she spoke of wanting just “two hours” of sleep and then she would “be okay”.  I think she stole those very words right from  inside my mind.  And she made my heart soar when she explained that things would be okay.  She made me cry when she explained that it is okay to continue planning life and living life as it comes.  With my Abby’s surgery only one month away, I feel as though I have stopped planning.  Margaret Cardall reminded me that I should never put off doing anything because of what the future may hold.


Next, Paul Cardall played music and spoke a little.  His first songs were beautiful and included Gracie’s Theme.  Gracie Gledhill passed away last year after an unsuccessful heart transplant.  As Paul began to play her theme, I looked straight ahead at Gracie’s beautiful mother, smiling gently as Paul plays this beautiful tribute to her daughter.  And suddenly I’m crying.  Tears are streaming down my face and something heavenly is there in the room with us.  I can feel it.

At a loss for words.

Paul explains that while he was at Primary Children’s Medical Center, the same hospital Abby had her surgery and the same one we will be back at on June 1st, he knew God was there.  From unseen voices in the night to the feeling of heavenly attendance, he knew God existed and was present at this special children’s hospital.  I have known that too, for ten years now.


The afternoon lifted my spirits and left me feeling a little less alone.  The road ahead brings me right back to the doors of one more open heart surgery.  My sleepless nights and restless dreams are nightly.  My episodes of anxiety heart racing, can’t-catch-my-breath, feeling of dread are cropping up more frequently.  My fears of how I’ll walk down that hallway and watch my daughter walk through the doors with an anesthesiologist and put on my brave face for her can’t be pushed away as easily.  But, I know that others have walked the road with me and I know that others will be there supporting us.  Today, I found that hands are all around, waiting to lift us up and fill our spirits when ours are lacking.  Thank you IHH for an afternoon of exactly what I needed.

April 25, 2010 at 2:07 am 4 comments

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