To all my Heart Mom's..

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

I happened upon a fascinating article in the Journal of Clinical Nursing. The article was written by Shu-Fan Lan, Pei-Fan Mu, and Kai-Sheng Hsieh. They are MD’s or RN’s that work in the Pediatric Cardiology field. They conducted a study in 2003 and their results of the study was printed in the journal in 2007. The article is titled “Maternal experiences making a decision about heart surgery for their young children with congenital heart disease.” I am not a scientist and am not a researcher for CHD or psychological issues. I am a mother of a daughter with CHD and reading this article did two things for me…it made me say “Wow! I’m not the only one that felt that way,” and “I bet that would help others in the same situation.” So, I’m going to share some of their findings here and include a link to the article. I will probably include this information in two posts over a couple days.

The study basically dealt with nine families who had children with CHD’s confirmed at birth or shortly after. Six of the children (four boys and five girls) were diagnosed with Tetralogy of Fallot. Three were diagnosed with ventricular septal defect and one of the babies with VSD also had transposition of the great arteries and atrial septal defect. The study focused on the mother’s, who were the main caregivers to the CHD child, and the families. It examined how the stress altered day-to-day activity, how stress was reduced when making care decisions for the child, and how the family relationships handled the stress.

The study found five themes dealing with the open-heart surgery itself that preoccupied the day-to-day living of families dealing with CHD. Those five themes were understanding the surgery step by step, role pressure, constructing a caretaking ability, endeavouring to maintain family function when preparing for surgery and deliberate consideration to make a correct decision.

Understanding

The first theme of understanding the surgery step-by-step contained transitional steps. The first transitional step towards understanding was shock over the diagnosis. This stage is one anyone with a CHD baby has understands well. This article noted that this stage has a wide range of feelings and not everyone has the same feelings. Some of the emotions felt in this stage include:

*shock

*disbelief

*confusion

*anger

*disillusionment

Another important aspect of this stage is asking why. The stress and fear is greatly increased in parents who can’t get adequate answers as the cause of the CHD. The article stated “on asking, the lack of medical confirmation of the cause of the illness makes them feel regretful and helpless.”

The second transitional stage in the understanding the surgery stage is a dream or hope of the surgery being unnecessary. I have been here. I was sitting in my new pediatric cardiologists office when my baby was three days old, watching other mothers with their CHD babies, thinking, this will all go away. After the tests are done, I will find out it is nothing and we can go home and get on with enjoying this baby. After learning of the diagnosis, a part of me still wanted hope for that “miracle” that some people get. A medical miracle, a miracle from God, an uexplained miracle, good luck, good karma….whatever people called it, I wanted one. This is transitional stage two. Emotions in this stage include:

*fear that surgery will cause the child’s death

*fear over negative after-effects of the surgery

*added frustration over lack of knowledge about CHD and potential therapies

*concern over scarring

One mother of the study commented: “In the beginning, I was struggling. I worried she might have a scar here (pointing her breast) after surgery, especially as she’s a girl. I wished there was no need of surgery. We would just wait to see if medicine could heal her.”

Lastly, the transitional stage of accepting the fact of surgery. This stage comes to every CHD parent. After the mourning, the shock, the disbelief, the hoping against hope, the fear…comes the realization that surgery is the treatment and only way for a possible future. Emotions in this stage include

*a sense of relief that baby is a part of the family

*a sense of gratitude or feeling lucky that their case of CHD was not as serious or fatal as others they come to know

*an understanding that their child’s CHD is serious and the only possibility for a partial or full recover is through surgery

*a sense of relief for a plan and direction of treatment

Caregiver’s Role Pressures

The second theme investigated in the study is the extreme pressures placed on the caregivers of children with CHD. These pressures affect the entire family, but appear more affective for the primary caregiver. This stage includes mood-swings in the caregiver.

These mood swings happened on a day-to-day basis over the care of the child. Realizing the frailties and precarious health condition of the CHD child caused anxiety and stress, resulting in a sense of moodiness. The primary caregiver’s concern over the environment and affected all members of the family. The caregiver generally focused on the CHD daily, worrying over the health and well being of the child. This had a tendency to make the family have a hard time relaxing. Often times this period of role strain created a sense of guilt, especially for mothers. Mother’s often felt guilt over not being able to create a perfect child, giving their child a CHD, and guilt over the perceived neglect of other children in the family. Apparently, and this made me feel normal, mothers carry guilt over the scar that will be left upon their child’s perfect body. Caregiver’s also carry guilt over a feeling of responsibility. One mother explained: “I felt responsible so I almost didn’t sleep. During the time I looked after him, I lost 20 kilograms in 3 months.”

While the emotions of having a child with a CHD are turbulent, understanding those emotions and accepting that those emotions are normal can help. Part II of this study will be coming soon. The citation to the article is:

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.

Add comment February 27, 2010

Letter From a CHD Survivor

I look like any other girl. I like all the things the other kids like, Soccer, Basketball, tag, and video games. But I’m a little bit different than all of the kids. I’m the daughter of Nicole Wardell. I’m ten-year- old and I have Tetralogy of Fallot, a heart defect. It affects my life a whole lot. It isn’t horrible but it’s not too fun either. If I could write a letter to all the kids in the world with CHD and their families, this is what it would say.

Dear children with CHD,

I’m Abby and I have CHD just like you. I’m sorry to say having this heart defect is not easy. It will affect your life a lot. I know you must have more trials than most of your family. In this letter you will not only find advice on how to cope with it but you will also find how I feel about it.

Are you made fun of just because you’re short? Don’t worry I deal with it too. Even though the teasing can get tiring I’m 10 years old and I can still be carried by my parents. So If I can still be carried you can probably be carried for a long time too. It will be a thing that I miss when I finally get too big.

Do you run out of breath easily? I do. What I usually do is stop and take a rest. Your friends might think that’s weird but tell them why you need to stop and they will understand. You probably won’t like that but in the end you’ll be happy you didn’t faint on the playground.

Do you tend to stay sick longer than the other kids? You guessed it, I do too. Whatever you do, don’t worry. It’s normal because of your heart. It isn’t fun but you’ll just have to live with it.

Having this heart defect isn’t too fun, but it isn’t always bad. My life is a lot like my friends. I like to read books, play the piano and the guitar, listen to music, play video games, and lots of other things. I get good grades in school and like to shop for clothes.

Doctor’s and nurses can do a lot to help us overcome our heart problems. This summer I have an open heart surgery. I’m very scared. Even though I don’t want to have it, I have to. It will be yucky, no doubt about that but, my heart will be fixed and I won’t have to deal with lots of these problems anymore.

Those of you reading this have survived the disease or know someone with the disease. Others are not so lucky. It is very sad but too true that thousands of kids around the world lose their lives to CHD every day. So please give a helping hand to those in need. I hope you know you’re not the only one who deals with these trials. Let’s try to deal with it together.

Your Friend,

Abby