Understand Common Initial Feelings Regarding Hemophilia

Edited by Lor777, Eng, Ermin, Lynn and 1 other


How many times did you say, "As long as it's a healthy baby!" when people asked if you have wanted a boy or a girl when you were pregnant? Now the one thing you may have feared most has actually happened: You have a baby with a chronic medical condition. Even if hemophilia runs in your family, you may still have convinced yourself that it might "skip" your child. Because hemophilia is so rare, you may feel that you are being singled out. Why is this happening to you? In a way, you probably feel like the victim of a crime: The thing of most value to you has been stolen--that sense of security about your baby's health, that "clean slate" you thought you were entitled to have. Through no fault of your own you are left feeling robbed.

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You're not alone! Most of us experience a wide range of emotions when we learn our child has hemophilia. Above all, we feel a tremendous sense of loss. You may feel like crying all the time, punching a hole in the wall (or your doctor), or perhaps just denying the problem.

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Try to remember that you are going through a transition period in your life. You are trying to adjust to a major life change. Any major life change--having a baby, suffering a loss in the family, changing careers, retiring, even winning the million-dollar lottery--requires you to adjust a bit, and this will take some time. In fact, I've always been leery of people who suddenly and cheerfully adjust to major life changes; it just doesn't seem normal! Be good to yourself.

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One way to work through your emotions is to identify what you feel. It may help to review the stages that most people go through when grieving. Grieving is a healthy way to learn how to cope with the diagnosis of hemophilia and eventually to gain control over it--as long as you don't allow these stages to control you! Identifying which stage you are in and knowing why can actually help you master your emotions and move you along toward acceptance of the diagnosis of hemophilia.

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Stages of Grieving

  1. 1
    Shock is often the first stage on the road to acceptance. You may experience an emotional numbness when you learn that your child has hemophilia. This numbness protects you from the trauma of hearing that your child has hemophilia. Instead of feeling overwhelmed or depressed--both of which might leave you so immobilized that you cannot care for the baby--you continue to care for him, cook dinner, or socialize superficially. You can still function.
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  2. 2
    Eventually, the body and emotions adjust, and shock wears off. Now people are telling you that your child has hemophilia and may need blood tests, but you disagree. You may be experiencing a second stage, denial. When you are in denial, you think that this diagnosis is a mistake. Denial is a powerful, normal defense mechanism that again helps you cope and gives you temporary control over your life. Denial creates an almost invisible barrier around us and pushes the problem outside this barrier.
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  3. 3
    When denial passes, you may enter the third stage, anger. Anger may be born of your feeling of frustration that you cannot do anything to control the course of events. Hemophilia is here to stay. Your anger is a normal coping reaction, a vent for the frustration you feel at your inability to make hemophilia go away. Congratulations! Feeling anger means that you have started to accept hemophilia as a part of your life.
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  4. 4
    After your anger has subsided, you may go through a period of depression, characterized as sadness, crying, and despair. You may be feeling these things right now! This is a grieving stage. This stage usually follows denial and anger as the next step in learning to accept. Your depression is a sign that you are learning to accept the diagnosis.
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  5. 5
    As we learn to accept the diagnosis of hemophilia, we may try to blame something or someone. Unfortunately, when hearing their child has a genetic disorder, parents--particularly mothers--may blame themselves and experience a tremendous sense of guilt. Because in most cases of hemophilia, the mother transmits the disorder to her child. A carrier mother may feel responsible for passing along this "bad" gene to her child. Guilt is a normal reaction for parents. Expectations are so high when a new baby is born, we can't help feeling responsible. Yet, we know that the occurrence of hemophilia cannot be controlled genetically. Can you control your child's eye color? Hair color? How tall we grow? Of course not! What you are feeling is normal.
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Tips Tricks & Warnings

  • Be good to yourself. It is not your fault your child was born with hemophilia.
  • Allow some space, time, and room to express the wide array of emotions you will feel. You will work through them eventually!
  • At first I felt guilty. This didn't last long once I realized that while I passed this on to my son it wasn't intentional.

Questions and Answers

My son was born with hemophilia should I be a stay-at-home mom?

It depends. If you are the breadwinner in the family, you do not have to be a stay-at-home mom to take care of your son. You can ask your mother or father, or you can find professional child care to look after your child. If your spouse has a good job, and your family can afford for you to stay home then why not stay at home to give all your attention to your child with hemophilia? As we all know, hemophilia disease can cause sudden internal or external bleeding, so you really have to keep an eye on your son, especially if he is still young.

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Categories : Emotional Health

Recent edits by: Lynn, Ermin, Eng

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