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Mended Little HeartGuide

Diagnosis 3 In The Grief It is completely normal for parents and caregivers to feel grief, and even intense sadness, when their child is diagnosed with CHD, hospitalized or told that they need surgery. Grief is often strongest in times of crisis but can pop up — sometimes unexpectedly — at other times during a child’s life as well. When you get home from the hospital, the grief that you didn’t allow yourself to feel while you were there may catch up to you. Grief may be stronger on milestones like birthdays or the anniversary of a surgery or diagnosis. Cardiology appointments, hospital visits or heart procedures may bring grief back as well. This grief takes many parents and caregivers by surprise because they thought that they had already worked through the sadness. Sometimes parents and caregivers don’t even understand why they are sad. Here are some common reasons for grief that can be hard to identify until you learn about them from another parent: Loss When discussing the gender of a child before birth, many parents say, “I don’t care if it’s a boy or a girl, as long as the baby is healthy.” After the diagnosis of a congenital heart defect, it is normal for parents to mourn the “healthy baby” they had hoped to have. This doesn’t mean that you don’t love your child with CHD. You are simply adjusting to having a child who may face unexpected challenges and limitations. You may feel grief because your child might not be able to participate in sports or some other activities that children without CHD can. The feelings of loss might extend to siblings, who are likely to lose time with and attention from their parents because of their brother or sister’s needs. Parents often face this mourning process without the support of family members and friends because there was no actual loss of a child. It is a true loss, nevertheless. Other parents and caregivers who have gone through the experience understand these emotions. “Welcome to Holland” by Emily Perl Kingsley captures these feelings in a poem. Lifetime Condition When you get home from the hospital, you may continue to experience sadness. It can be very difficult to acknowledge that CHD is a lifelong condition that requires specialized care. Even after a successful surgery, you may feel sad that your child’s condition is not “fixed” and that other surgeries and procedures may be ahead. It just doesn’t seem fair, and it is very hard to watch our sweet, innocent children endure so much. Limitations You might also feel sad about limitations — either physical or developmental — that your child may have. Parents and caregivers want their children to have, do and be anything they want, and it is hard to accept that this might not be possible for your child. Before having children, many parents visualize what their children will be and do, but when a child is born with CHD, those plans may need to change, sometimes drastically. 1 General Information 2 Prenatal Hospital 4 Living With CHD 5 Forms 13


Mended Little HeartGuide
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