Supporting and educating patients and families on the intestinal failure,
intestinal rehabilitation and intestinal and multivisceral transplantation journey.
Coping: Parents with a Child Going Through Transplant
Coping with Your Feelings
Since your child was diagnosed, your life has changed. A transplant brings changes to your home life, including new stresses. Every family is unique. Your family may feel fear, anger, depression and guilt. By sharing these feelings, you may find it easier to cope with change. Use your support systems around you, your family, friends, and the transplant team are there to listen and help you through this difficult journey.
Fear
Fear of the unknown can be overwhelming and stressful to both you and your child. You may have fears about treatment, costs, or how to help your child cope with a transplant. Talk about these fears and get them out in the open to help you work through this very difficult time.
Anger
You may feel angry, and this is normal. Find ways to deal with this anger: go for a walk, a run, talk to someone, color a picture, or listen to music. Do something to relieve this feeling so you don’t transfer this anger to your child or the ones you love.
Guilt
Parents may feel guilty because they did not know their child was sick or because they are healthy. Young children often believe they have “magical thinking” and may feel that they caused the illness. Let your family know they did not cause your child’s illness.
Depression or Grief
Feeling sad is a normal reaction, but it can cause changes in family routine and feelings of being alone. Change can also cause grief and depression. Common symptoms are:
Decreased or increased eating.
Lack of interest.
Decreased energy.
Crying spells.
Headaches.
Tightness in the chest.
All of these feelings are common human emotions, know that you are not alone. With the support of family, friends, and the transplant team you can work through these emotions and gain coping skills to get through this difficult journey.
Suggestions to help cope with your child’s illness include:
Avoid talking about your child’s illness in his or her presence, unless he or she is included.
Find a private time to talk to a close friend or spouse; do not only talk about your sick child, find other things in your life to talk about.
Take turns with your spouse or another person who can stay with your child in the hospital or go to clinic visits.
This keeps a balance between parents and involvement in treatment
Talk with parents of other children who are going through transplant
Attend a support group, if possible
Ask for help and support. You are not alone in this and you shouldn’t be. There is no reason for you to do this by yourself.
Impact of Transplant on a Marriage
An illness can upset the family dynamics and any family’s life. Both parents may become emotionally and physically tired which can easily place strain on relationships and marriages. Spouses often feel angry and upset and feel that they do not have time for one another.
Suggestions for coping with strains in your marriage include:
Assess your coping styles: Understand how your spouse deals with emotions and stress. Some people cry, others get angry, and others may withdraw. It is important to understand each other’s feelings and coping methods so you can work together and find the best way to help each other during this difficult time.
Talk to each other: Communications is key to a good relationship. You need to discuss your feelings, your fears, and stresses. Silence can make you feel distant from your partner. Sharing feelings and facts can help the situation and can help you make decisions.
Change roles when needed: The stress of illness can change the roles of family members. Sometimes the mother needs a break from being caregiver and the father may need to take over for awhile or vice versa. It is important for spouses to recognize when the other may need a break.
Impact of Transplant on Siblings
Siblings can feel upset, scared, or unsecure about what is happening to their brother or sister. Children of any age can sense a change in their family. Some children may feel resentment or anger toward their sibling for getting more attention than themselves. Siblings may experience problems of their own such as depression, trouble sleeping, school problems, or physical complaints. There are many ways you can help siblings when your child is going through a transplant:
Tell them you love them and how they are special to you.
Carve out special time for them in which you only spend with them and not only with your sick child.
Take them to the hospital and involve them in the care of your transplant patient. Help them learn about the illness and how it affects their brother or sister which may help decrease fears and bring them closer to their sibling.
Ask a friend or relative stay in your home when you have to leave to go to the hospital with your transplant patient rather than taking them to someone else’s house, keeping a sense of normalcy.
Talk with their teachers if there is a problem in school so they can have support system throughout their lives.
Consider having them talk with a child life specialist, counselor, or psychologist if they are having extreme emotions.