Chronic (long-term) illness and treatments such as organ transplants can affect your child’s:
- overall development
- school performance
- self-esteem
Overall development
As children develop, so do their brains. This allows them to experience the world in more complex ways, face new challenges and, as a result, learn new skills. This is often called meeting developmental milestones.
Milestones can be:
- physical, for example the changes that occur during puberty
- cognitive (related to thinking), such as learning how to solve a simple math problem
- social, for example learning how to take turns when playing with others
All these skills depend on the brain developing and working normally.
Delays in development
Health problems and sometimes the treatments that cure them can delay a child’s development. For example, a build-up of toxins due to a poorly functioning liver or kidney can affect how the brain functions. Other times, a sick child might be isolated from other children or miss a lot of school.
In these cases, the child does not have as many opportunities to practise different skills and might struggle to learn them. If a child does not learn some basic skills and information, they struggle in later years with more complicated cognitive and social tasks.
The degree to which a child’s development is delayed can depend on the severity of their health problems or the child’s age when the health problems began or were diagnosed.
Many transplant patients reach their developmental milestones on schedule without being affected by their health problems. Some patients might be delayed in reaching their milestones and meet them a little later than other children their age. In rare cases, severe health problems can mean that a child will never reach some of their developmental milestones.
How you can respond
- If you are concerned about your child’s physical development, talk to your child’s kidney or liver transplant team or family doctor. Since everyone develops at different stages, any delays are most likely normal and your child will catch up. However, it is best to discuss any concerns in case there is something wrong that needs to be treated.
- If you are concerned about your child’s social or emotional development, most transplant teams have social workers, teen doctors, psychiatrists and psychologists who can help.
Challenges with school performance
Children with health problems often face extra challenges with their
school work.
It is common for transplant patients to be absent from school because of health issues. To help sick children keep up with their school work, most children’s hospitals have teachers who can provide some instruction. If there are repeated or lengthy admissions to the hospital, your child will likely receive extra school support to help prevent them from falling behind their classmates.
Options for long-term absence
If a child is unwell or restricted from going to school for a long time (for example after a kidney transplant), you may be able to ask your child’s school to arrange for a teacher to come to your home to provide some one-on-one instruction. This is called home instruction and is free.
If your child’s health issues are creating significant gaps for them in terms of school work, speak to your child’s teacher, guidance counsellor or vice principal about whether your child should receive a special designation. For example, your child’s needs may be reviewed by an IPRC (Identification, Placement and Review Committee), which may decide that your child should follow a special education program or have an IEP (individual education plan).
Special designations can help make sure that your child’s teachers know about your child’s needs and help your child have accommodations to help them succeed (for example, receiving extra support in a specific subject, or having extra time for assignments).
How you can respond
Regardless of your child’s age, encourage them to develop a plan so they can get their homework from their teacher or their friends and make a schedule to work on it at home.
If your child is too sick for any work, then of course they do not need to do schoolwork. However, if your child is well enough to watch television or play games on the computer, they are well enough to do at least some schoolwork at home!
Ideas from other parents
“My daughter is young and her teacher told us not to worry about schoolwork but to just focus on getting better. At first this made sense to me, but as she continued to miss school, I realized that this wasn’t going to work for my daughter. I explained to the teacher that my daughter was well enough to do some work but not the same amount as the rest of the class, so the teacher gave us some work and helped prioritize it so my daughter could do as much as she felt able to.”
“My son is quite smart, but he doesn’t particularly like doing homework. When he didn’t bring home any homework for almost a month, I called his teacher and found out that he told her that he didn’t have the energy to do work after school. Sneaky! He certainly had enough energy to be on the computer or to hang out with his friends. I arranged for us to meet with his teacher and talk about what would be a reasonable amount of homework that he could manage each night. I learned from this that I need to have fairly regular contact with my son’s teachers so we all have the same information and can follow the same plan.”
One parent, talking about their son's struggles with homework, said, “He told me it wasn’t fair that he had homework and I didn’t, and then I realized that there were lots of things I do that would be considered ‘homework’ for parents, like paying bills online and finishing up paperwork from my job. We decided to do our ‘homework’ together. After dinner, we both sit at the kitchen table and do our work for about an hour. While we can’t always do this, it has helped my son realize that ‘homework’ is part of everyone’s life, even for adults.”
Your child’s self-esteem
Self-esteem has been described as “one’s reputation with oneself”. It is also described as a person’s “armour” or protection against the many challenges we face in life.
Many things will affect your child’s self-esteem. For example, their health issues may affect their sense of who they are and what they can do, depending partly on their age when they were diagnosed and when they receive a transplant.
Regardless of health issues, some children are naturally more confident in their own abilities, while others are not as sure of themselves and avoid situations that could be stressful.
How you can respond
If you have concerns that your child may have low self-esteem, there are many resources you can access that can give you ideas and practical advice on helping your child.
Ideas from other parents
“I’m always reading about self-esteem, in magazine articles, library books and websites. It seems like there are literally hundreds of ways that your kid’s self-esteem can be affected, and that means that there are also hundreds of ways you can improve it too. I realized that what I’ve read doesn’t just apply to my daughter, it also applies to me, so learning about this has been good for both of us.”
“Our son and daughter are so different in terms of their personalities. Our son (who has a transplant) is much quieter than our daughter, and we were worried that this meant he had a lower self-esteem and it was because of his health problems. We talked to some of the people on his medical team about this, and also talked with parents of other kids with transplants. We came to realize that him being shy didn’t mean he didn’t feel good about himself, and we’ve come to see that both of our children feel pretty good about themselves, even though they are very different.”
I heard my son saying some really negative things about himself, and even though I told him those things weren’t true, it didn’t seem to help him feel any better about himself. I looked up some things on self-esteem and asked him to take a look at them with me. I told him that my own self-esteem when I was younger wasn’t very good, and we figured out some things we could do differently that would help him feel better about himself.”
How your teen views their transplant
A transplant has a huge impact on children and families. There is no doubt that health problems are usually stressful, but teenagers who are transferring to the adult system have some very thoughtful and positive things to say about how a transplant has affected their lives.
Positive effects of a transplant
Here are some of the positive things that teenagers have said about how they have been affected by their transplant. Their experiences may offer some comfort if your teen is still facing the biggest challenges of their illness.
“While I wouldn’t wish this on anyone else, it’s made me who I am and I am a nicer person than I probably would have been otherwise. Like, I don’t make fun of people who are different or who can’t do everything the normal way.”
“I am closer to my family, and especially my parents, than my friends are to their families. I think that’s because of all my health problems.”
“While I don’t always make the best choices, I think that I spend more time thinking about things that could hurt me, and I make better decisions than teenagers who don’t have health problems.”
“I appreciate my health a lot more than anyone else who is my age. I think that’s good because it means I take better care of myself.”
“I had to grow up faster than other kids because of my health problems. It was really hard sometimes, but now I’m doing well because I am more mature than I would have been if I wasn’t sick.”
“I feel like I know more about what’s important than other people my age. I’m not sure yet what my career will be, but I feel like once I decide, nothing will be able to stop me because I know that I’m strong and can get through hard times.”
Further information
For more information on the impact of an organ transplant, please see the following pages.
Impact of a child's transplant on parents and caregivers
Impact of a child's transplant on siblings
Impact of a child's transplant on finances