Raising a child with a blood or bleeding disorder impacts the whole family. You may go through a range of emotions when thinking about your child’s diagnosis. You may have questions. You may feel disoriented as you think about how life will look different than you thought. This is completely normal, and you do not have to navigate this journey alone.
This section of Family Life covers:
What Happens After a Diagnosis
What Happens After a Diagnosis
Your family's life has changed since your child's diagnosis with a blood or bleeding disorder. While you and your family may have new responsibilities when managing a bleeding disorder, it's important to see your child as not just a disorder. It's equally important to make sure others do so as well. Although you and your child will have additional responsibilities throughout each stage of their growth, remember your child can still move through the same life stages as other children.
To help your child lead as normal a life as possible, treat them like any other child. Help your child understand their strengths and any areas where they might need support. There are many social activities that your child can join.
Start to build your child's independence at an early age by including them in daily activities that increase a sense of responsibility. These activities may include getting their medication out of the fridge, collecting infusion or injection supplies, creating a sterile space for infusions or injections, and/or helping you log the infusion or injection.
Here are some common questions and concerns many people have when first hearing the diagnosis:
A. With modern treatment and proper management, children born with bleeding disorders can expect to live long, full, and healthy lives.
A. In the past, viruses like hepatitis A, B, and C, and HIV were passed from blood donors to people with hemophilia through factor treatments. Today these products are safer. The risk of getting these viruses through clotting factor products has been dramatically reduced by the following:
Screening of all blood donors for hepatitis and HIV.
Purification and treatment of all human blood products to kill all known viruses.
Development of recombinant products that have little or no human blood proteins.
To be even safer, it is recommended that all children with bleeding disorders receive immunizations for hepatitis A and B. There are currently no immunizations available for hepatitis C or HIV.
If you want more information about blood safety, please go to Blood Safety and Community Counts
A. Yes! In fact, your child should get plenty of exercise. Physical activity builds strong muscles that help protect the joints. Some of the more commonly recommended activities for children with bleeding disorders include swimming, bicycle riding, walking, jogging, tennis, golf, dancing, fishing, sailing, and bowling.
You and your child can work together to find the activities that work best for them.
Talk to the Hemophilia Treatment Center staff, especially the physical therapist, about safe, age-appropriate activities for your child.
Talking to other parents and caregivers of children with blood or bleeding disorders can also be helpful, especially if their children are older than yours and have asked many of the same questions.
Involve the whole family in activities. Family activities can be fun!
Encourage other activities, too. The arts offer many ways for creative expression.
Your child may want to try the activities that are popular with friends or peers. If these activities cause painful bleeding episodes, you might need to work with your child to understand how to be safe when physically active. Talk with your health care provi der about your child’s needs before beginning any new activity.
If you would like more information about safe physical activity practices, please go to Physical Activity. .
If you would like more information about the risks of different sports, please go to Playing It Safe.
Siblings
Some parents and caregivers find it difficult to predict how siblings will cope with their sibling’s bleeding disorder. Regardless of their reaction, spend time with them and provide age-appropriate information. Setting aside time for talking can help children build coping skills and know that their feelings are acceptable and valuable. If your family is having trouble talking with each other, the social worker at your Hemophilia Treatment Center (HTC) may be able to help.
When talking to a child about a sibling’s blood or bleeding disorder be mindful of the child's developmental stage. All children may not be able to understand the same explanation. Adjust when and what you say to your child's age and specific questions. When talking with your children ask if they have any questions. This will help you understand exactly what they want to know rather than offering more information than they are ready for.
Talking with your child gives you insight into how they are coping with challenges. Using a few simple techniques to begin conversations will make your talks more meaningful and help you determine if you need to step in or step back.
Talking with Siblings About Blood and Bleeding Disorders
It may be useful for your siblings to understand the genetics of bleeding disorders. You can help your siblings know about how bleeding disorders can be inherited, and what kinds of tests are available. Your siblings may find value in testing for clotting factor levels or other bleeding disorders as these tests can help your siblings understand their own health and make informed decisions.
If you want more information about genetics of bleeding disorder, please go to How Does a Person Get a Bleeding Disorder?
If you want more information about testing for bleeding disorders, please go to Carrier Testing.
Having trouble getting the conversation rolling? Here are some conversation starter tips:
Ask concrete questions first.
Ask open-ended questions.
Keep questions simple.
Keep questions specific.
Ask follow-up questions.
Pay attention to body language. Sometimes kids say one thing, but their body language says something else.
Here are some activities to better communicate with your child:
The time spent driving from one activity to another can be time spent discovering what’s going on in your child's life.
The back seat/front seat situation offers a level of comfort for kids. They don't have to look you in the eye or see you wince if they ask or say something you weren't really prepared to hear.
Driving lets you think through an answer and pause as you find your way around busy roads—and sensitive questions.
Send a brief text to say, 'How are you?' or just a quick 'Hey, what's up?'
Message your child how proud you are of their recent achievement or send a card to let your child know you are thinking about them.
Tell your child that you’re always there to talk with and support them.
Walk the family pet, play a game, or work on a project together.
Use playing a game together to connect. The focus is on the game and your child will feel less pressure. They may be more likely to open up and share what's on their mind.
Asking your child about their day or a topic in the media may spark a conversation you may not have otherwise had.
Don't lecture. Rather, listen to your child's opinion and offer some opinions of your own.
Ask each child about some part of their day.
Try playing the joys and concerns game. Each child—and each adult—recalls one happy situation that occurred that day or something that they are concerned about.
Tips for helping kids understand their sibling’s blood or bleeding disorder:
This will help give them a better understanding of what kind of treatment their sibling needs.
Encourage them to ask questions and keep them informed!
Teach your child how it affects their sibling’s body, and how it makes their sibling feel
When their sibling has a bleed, reassure them that they will be okay.
If your child is interested in helping, give them a small task.
Younger siblings can help organize the treatment supplies, pick out fun adhesive bandages, or hold an ice pack.
Older siblings can help with more complex treatment tasks if applicable.
Some chapters have programs specifically designed for siblings.
There are lots of camps where siblings get to join in on the fun and learn more about bleeding disorders. They will get to meet other siblings of kids with bleeding disorders, learn about their experiences, and share their own.
Talk to your children about all the feelings they might have about their sibling’s bleeding disorder. For example: You seem upset. It's okay to feel that way. This has been hard on you, hasn't it?
Show empathy. For example: I'm sorry. I'll bet that feels terrible. That must be hard for you.
Share your feelings, both positive and negative. For example: I feel that way sometimes too.
Helping Siblings Explain a Bleeding Disorder to Others
Siblings may be asked about their sibling’s bleeding disorder by friends and peers. Here is a simple answer that a sibling might use:
My sibling [SIBLING NAME] has a bleeding disorder called [NAME OF THE DISORDER]. This means [THEIR] blood doesn't work right. When [SIBLING NAME] gets bumps and bruises, it just takes a little longer for [THEM] to heal.
Becoming a Resilient Family
Living in a family with a blood or bleeding disorder can be stressful at times. Caring for someone, or more than one person, with a blood or bleeding disorder can disrupt normal family routines. While managing a blood or bleeding disorder can be challenging, try to be open and accepting of the many definitions of what is normal. The most resilient families are those who work together as a team to manage the responsibilities of a blood or bleeding disorder.
Here are some ways for your family to successfully manage a bleeding disorder:
Spend time together as a whole family. Family time builds strength and trust which helps with stress. You can schedule a simple activity, like a movie or game night at home or a picnic in the park.
To help your family cope, stick to your established family routines and activities as much as possible. Even during stress, continue to plan events and vacations, accept invitations, visit friends, and arrange play dates. Check out events or activities offered by your local community center, faith community, or local bleeding disorder chapter. It is important to plan regular fun-filled family activities.
Try to include the whole family in caregiving responsibilities. It is important to remember that every family member can help. Smaller tasks can be assigned to children, and as they grow, they will have the confidence and skills to take on more responsibilities. Seek support and help from members of your family and support network.
Family meetings are a great way to offer every family member the chance to talk about feelings, upcoming events, changes, and family plans. Children and teens can voice concerns and discuss possible solutions.
You might be surprised by how willing people are to help. All you need to do is ask! Members of your local bleeding disorder chapter, faith community, or your neighbors will be pleased to offer a meal, the chance to babysit, or a listening ear. Often, they might not know what to do to help. Tell them exactly what you need. Someday you’ll be able to help them too.
As a parent and caregiver, it is important that all your needs are met before you can meet the needs of others. Take time on your own or with your friends. Join a support or discussion group. Find an enjoyable activity. Don’t feel guilty or worry that you’re being selfish. Caring for yourself will help relieve stress and give you the strength and energy you need to care for your family.
Try to avoid letting your child overhear conflicts between family members and others. It is important to not let children overhear conflict about their medical care. You want your child to feel like the family and health care providers are a supportive team.
Being organized will lower your family’s overall stress level. Keep all of your child’s medical information, school documents, emergency forms, and other important information in one place. Writing things down will help you remember appointments or questions you have for the healthcare team.
Teach your child how to deal with the responsibilities of a bleeding disorder. Teach your child and their siblings the importance of good communication, making friends, focusing on strengths rather than challenges, and setting goals.
Each morning, try writing down all the things for which you’re thankful. Gratitude is a powerful coping tool. This simple tool will often help keep you focused on the positive, and it will set a good example for the rest of your family.