Brothers and Sisters

We read blogs, stories about CHD kids and their parents almost every day.  We’ve come to understand through experience or education, the challenges of both, but seldom covered is how siblings of CHD kids are affected.

Families with multiple children face a very unique challenge, for the parents especially, it becomes a huge time management effort in balancing the needs of your CHD child with the needs rest of the kids.  Striving for and achieving this balance seems quite challenging but not impossible. So is there a mathematical equation for making all of this work?  for reaching that pinnacle?… probably not, as each family unit is different, but there is one common factor that seems to significantly contribute to success – COMMUNICATION.

Families in which siblings of a child with CHD are integrated into the education and information about the condition tend to receive greater “buy-in” from their kids. That is to say, that by including them and talking about the specific form of CHD and all the process, care and procedures that go into making it better, siblings feel more empowered and included.

But what happens when parents have to leave siblings behind while their brother or sister goes into the hospital? ( We’d actually love to hear your input on that.)  We know that ensuring they are in the care of family members; grandparents, aunts or uncles, is always best.  And this support system is essential when communicating complications or procedures, but what’s the best language?  What words to use?

While we searched for substantial answers to this dilemma we found very few resources but we did come across one site that we want to share with you www.corience.org. They have put together this really wonderful FACT sheet for parents so we wanted to highlight some of the suggestions from the author Maria Escuerdo:

Parents need information

Parents frequently feel that the stress and anxiety they endure at this time stops them from finding sufficient emotional peace and quiet to provide the adequate explanations and information that their other children need. However, the siblings do need to be informed.

  • Parents need to make an effort to explain, because providing clear, precise information, adapted to the right level of understanding for the child is crucial in the adaptation of the siblings to the new situation.
  • The illness has to be demystified, and the child helped to understand that his or her sibling’s suffering is not anyone’s fault, that it is not contagious, but that it is serious and requires cooperation from everyone. 

Communication and contact are crucial

Because of the long period of time that they spend together and the ambivalent feelings that are normal during childhood, the ill child’s siblings sometimes think that the negative feelings they have for their brother or sister (when he or she receives more attention from the parents) are the reason for the situation. They might also think that they are the cause of the problem because they argued with their sibling. Therefore, it is essential that parents talk to the siblings about their feelings.

  • The siblings should be encouraged to express their feelings. They should be made to see that the feelings they have (pain, jealousy, worry, fear, relief, etc) are quite normal.
  • The feelings that are justified (eg. pain, sadness, worry, etc) have to be separated from those that come from fantasy or a mistaken interpretation of reality (eg. guilt, abandonment, fear of contagion, envy, etc), which are feelings that need to be eliminated.

Involving siblings helps them to accept

  • Siblings should be involved in the preparations made for the child to go to hospital.
  • If the ill child is offered the chance to go around the hospital or read material about the illness, the other children should be included in these activities, providing that they are a suitable age. 
Full text of Maria’s Blog post can be found by clicking: FACT SHEET FOR PARENTS
Siblings, such a wonderful and integral part of a CHD Child, and another amazing gift for every family.
We’d love your feedback on this topic as it will only help other families.  You can post your comments below.

One thought on “Brothers and Sisters

  1. I have a very unique situation. I had surgery at the age of two, but no other complications until I was 25. Then, at 35, I had my first cardioversion one week before my sister’s wedding. We did not know if I would be able to travel, stay in the South Carolina heat, or go to the wedding- much less be the only bridesmaid for which she had planned. We have gotten through that and much more. Since I began aging I am having more complications. We make a list of questions before each visit so that she and I can learn more about my original defect, the changes that are coming on with age, and have worked out a “game plan” if and when I need more advanced care. She also makes sure that every time I am in the hospital, my 4 year old nephew visits for at least one day. This is to be sure that he is never afraid to see me with tubes and oxygen. He bring his lunch box and Hot Wheels. Last time I had to stay for more than a day, he came for lunch and we had a picnic in the floor. He and the nurses had a car wash for his Hot Wheels. We told him at the time that Aunt Missa was just sick. He has since heard me do a childrens’ sermon about CHD and the Samaritan’s Purse Children’s Heart Project during CHD week. So now he knows my motor does not run the same as his mom’s. It was easier for him to understand when I compared my body to how a car works. He loves anything with a motor and wheels.

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