Feelings are normal and everyone experiences positive and negative feelings at different times in their lives. Being diagnosed with a chronic condition or learning that your child has a chronic condition may make a person feel stressed, sad, and sometimes depressed. It is important to know that these feelings are normal, and it is also critical to know when to seek help if you feel overwhelmed with emotions.
Hearing that your new baby has a chronic condition can be very stressful. Parents of children recently diagnosed with hemophilia often experience a period of shock, and they may feel stressed and emotional about their child’s condition. It is important to remember that the bleeding disorder is only one part of your child’s life. The bleeding disorder should not define his or her identity. Many parents expect to have a perfect baby, but the truth is that no one is perfect. Almost every child will experience some sort of medical concern during their life, whether it is an eyesight problem, allergies, asthma, kidney problems, etc. Every child is special in his or her own way. Children with a bleeding disorder have the power to lead successful and fulfilling lives.
Some parents go through the following emotions as they confront the diagnosis of a bleeding disorder:
Some parents experience a period of denial because it is too hard to face the reality of the diagnosis. Denial is a coping mechanism, and it will not make the situation go away. It is important for denial to only last a short period of time, if it exists at all, so that parents can move into an acceptance period. Being in denial for a long time can ultimately affect the child’s well-being. A parent in denial may miss the signs of a bleed or may make comments that make the child feel that hemophilia is bad, and therefore the child is bad.
Some parents go through a period of withdrawal where they become emotionally distant from the child and/or from other people. Since bleeding disorders are genetic, parents may feel guilty that they “gave this” to their child and subconsciously may detach from the child. It is important to remember that there is nothing the parent did wrong to give a bleeding disorder to their child. Passing a gene for a bleeding disorder is no different than passing a gene for blue or brown eyes.
If a parent goes through withdrawal for a long time, they may miss out on wonderful childhood experiences. Every parent must remember to enjoy their child each and every day, whether the child has a medical diagnosis or not. Other parents withdraw from social situations and family and friends. They may feel that no one understands what they are going through, and therefore prefer to spend time alone with just the immediate family. Isolating yourself and the family is not healthy. Seeking help and building a support network are not easy to do sometimes, but they are important steps in dealing with and accepting the diagnosis of a bleeding disorder. It is recommended for parents to seek support as they adjust to having a child with hemophilia.
There are resources that can help parents get through this difficult adjustment period:
- HTC: Treatment centers often have a social worker as part of their staff. These specialists can help parents as they adjust to the diagnosis of a child by providing resources and guidance to help with the financial, emotional, and social stress associated with a new diagnosis.
- Parent Support Groups: There are private groups on social media that consist of parents of children with hemophilia. Parents in these groups can discuss how they are feeling, experiences they have had, lessons learned, etc. These groups are a great way to get educated and get support from others that understand what you are going through. As with any social media, it is important to know how the group is structured, who the members are, what the privacy policies are, and how posts are monitored, in order to ensure a healthy exchange of information.
- Local Hemophilia Community: There are local non-profit organizations that serve people affected with bleeding disorders around the country. These organizations provide educational conferences as well as social events that bring individuals with bleeding disorders and their families together a few times per year. Click here to find a member organization near you.
Children process emotions and feelings differently as they grow developmentally. A child who is 3 years old asks very different questions about hemophilia than a 9-year-old or a 14-year-old child.
Children in this age group are egocentric. They believe everything happens because of them and that they can make things different if they just wish hard enough. A child in this age group needs to be reminded that factor will stop the bleeding so that he can go and play and have fun. It is important to not treat factor as a punishment. Parents should avoid saying things like, “If you keep doing that, I’ll have to give you factor.” This kind of phrase has a negative, almost punishment-like approach, and needs to be avoided.
School Age Children
Children in this age group are capable of seeing the cause and effect of situations on their own. In other words, they can understand that certain activities may lead to a bleed, and therefore, to factor treatment. At this stage, children start to think about others’ feelings and may start worrying about their parents. Some children go through periods when they don’t want to tell their parents about a bleed or pain because they don’t want their parents to feel hurt. It is important for parents to reassure the child that the bleed needs to be reported and that together they will take the proper steps to ensure it heals quickly. Parents must not overreact when a child reports a bleed, and they should treat the issue calmly and supportively.
By the time your child reaches adolescence, he will likely know as much about hemophilia as you do. Adolescents worry about what others think, so having hemophilia may make them feel different. It is important for your child to know other teenagers with a bleeding disorder so they know they are not alone. As a parent, you can help your teenager by being a good listener. It is important for parents to not try to fix their problems or tell the young adult how they should feel. Parents need to listen, and be sympathetic and supportive.