Posts filed under ‘Stress of CHD’
Abby’s Tetralogy of Fallot can best be described as life altering. From the moment we found out she had a congenital heart defect, our lives were forever altered. Nothing would ever be the same for us again. I would never look at anything in quite the same way–our lives were changed. By the time our second child came along, three years after Abby, our changed world was normal. In our eyes, CHD was just something we dealt with. Sometimes it just floated along in the background and other times it took a more commanding presence. Abby’s younger brother, Nathan, has never known life without CHD. He lives with it, like the rest of us. It is part of his life just as much as it is for the rest of us. In the world of CHD victims, he is a silent victim. It hasn’t physically altered his heart but it has touched his heart in other ways.
From as long as I can remember Nathan has been Abby’s biggest fan. As a sibling to a heart child, he has learned to be patient and understanding. He is sensitive and empathetic to the feelings of others. As the date for Abby’s second surgery nears, I can see the toll it is taking on him. My heart aches for him.
On more than one occasion he has made comments like, “I wish summer was over so Abby’s surgery would be done” or, “Why do they have to cut Abby?” or, “I don’t want Abby to get hurt.” These talks often are accompanied by tears or frustrations. As her date draws closer, his emotions are more frequent…he is scared for his sister and dreads her surgery almost as much as Abby herself.
If that was all he had to deal with, I think we could handle it. But that is not all a sibling to a heart child deals with. On top of fear and sadness, Nathan has some additional emotions pulling at his heart strings. Abby wanted nothing more than a Nintendo DS to take to the hospital. She has wanted one for over a year. We made her a deal that if she worked toward helping to pay for it, we would buy one for her before her surgery. She readily agreed. Last weekend, she collected some items and sat outside at a community garage sale and earned enough money to buy her DS. Her aunt took her to the store and they purchased her DS. The moment she came bounding into the house with her new purchase, complete with games and accesories, I saw the hurt in Nathan’s eyes.
In addition to fear and anxiety, you can add jealousy and alienation to his list of emotions. I felt terrible. He mumbled to me, “Abby gets a DS?” I put my arm around him and tried to explain that because she would be in the hospital, and because she earned the money for it, she was able to buy one. While Nathan understood what I was saying….it certainly didn’t change the hurt and jealousy his little seven-year-old heart was feeling. And to add insult to injury, later that night as I was tucking him in, he told me he was sorry he got upset over Abby’s DS…he felt bad for being upset. Now he has guilt to add to his emotional baggage.
I have been reading everything I can find on how to help these “other” victims. While the research and field of CHD is not silent on the subject, it certainly does not contain a wealth of information either. I did come across an article that has been particularly helpful by Dr. Lauren Solotar, Ph.D. The article was written for siblings of Special Needs in general. Solotar explains that siblings may become abusive, argumentative, combative, and frustrated. Other siblings may become overly helpful or attempt to become a “perfect” child. Either way, these signs are clues to help parents know that they are needing help.
Solotar gives some steps parents can take to help siblings. These steps include:
*LISTEN to your child. Ask them to share their feelings and let them know you understand HOW they are feeling. “Are you telling me you feel angry over…?” or “So you feel left out when….?”
*Let them know it is okay for them to feel how they are feeling. It is important not to tell them don’t be mad or you shouldn’t feel that way. They need to have their feelings validated and they need to know that there is nothing wrong with feeling jealous or angry or alienated. Help them find healthy outlets for negative feelings and help them know it is okay for them to feel how they do.
*Make siblings your ally. Help them understand the condition of their sibling and help them understand what they can do to help. It is important not to make them feel unnecessarily responsible for the child but having them help and understand the CHD child can help them feel less pushed aside.
*Be fair. Don’t make your healthy child do all the chores and work while CHD children are excused. Find ways of making chores and other activities fair. CHD children can pick up toys or help wash dishes. It is important not to let special needs children “off the hook” in the eyes of siblings.
*Give each child individual attention. Siblings who are acting out especially are signaling they need some special one-on-one time. This special attention is imperative to making them feel secure and important.
Dr. Solotar explains that “With your encouragement and support, your typically developing child can become a more loving and understanding person because she or he has a brother or sister with autism.” I believe the word “autism” could easily be replaced with the words Congenital Heart Defect as well!
The other victims of CHD need just as much love and attention if not more to ensure that they never feel pushed aside.
If I could take away Nathan’s emotions, I would in a heartbeat. Since I can’t, I can do everything in my power to let him know that he is every bit as important and loved in my eyes as his heart sister. And in the end, I think he will come out a better person in spite of CHD!
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.