Parent Experience

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If you are a new proud parent, congratulations on your new child! Your family will grow together in beautiful ways and we are here to support you on your journey.

This section of the website focuses on the more difficult themes and concepts, because these topics may require more support. The focus on hard topics does not mean that every parent will experience the challenges discussed here, some families may never experience them.

Parents of a child with a congenital hand difference (CHD) may feel shocked, sad, worried, and isolated. The diagnosis is often a surprise, and parents may not know anyone with a CHD. Some parents underestimate their child’s future abilities and have a hard time imagining their child’s future. If you are experiencing any of these feelings, know that you are not alone! Please read the parent narratives on the Personal Experiences Page. If these feelings have a negative impact on your daily life, talk with your heath care providers to help you develop effective supports and coping.

When we say “parent” we refer to anyone who takes on parenting roles or responsibilities for a child with a congenital hand difference.

Imagined Future

Parents begin to bond with their child before they are born, envisioning the future – crawling, walking, first day of school, learning to ride a bike, playing sports, and first dates. The phrase “10 fingers and 10 toes” is often used to signify that a baby is “normal and healthy.” However, a baby with a CHD challenges this expectation and causes parents to worry about the future of their child.

If parents do not know people with CHD, they may wonder “How will my child ride a bike? How will my child tie their shoes? Will anyone ever want to hold their hand? Will they get married?” Parents become worried over these details and have difficulty envisioning their child doing these activities with a CHD, or may have difficulty thinking of how to teach their child to do these activities.

We are here to share that, in fact, children and adults with CHD engage in all of these activities. As your child grows and develops, with your support, you will see that the number of their fingers and toes is irrelevant to their future!

We encourage you to check out or Personal Experiences Page and read stories of parents and children/ teens/ adults with CHD. Take time to review their experiences, this will help you to develop a positive narrative and imagined future for your child and your family.

Grief and Coping

Grief

When parents first learn that their child has a CHD, they may enter into a grieving process to mourn the loss of the ‘expected hand’. Grief has many phases, but it is not linear. Parents may experience all phases at one time, none of the phases, or may move between phases. Know that everyone experiences grief differently. Some parents don’t grieve, while others grieve for many years.

If grief over your child’s CHD is negatively impacting your daily life or impacting the relationship with your partner, please seek help from your health caregivers. They can develop effective supports for you and your family.


*Parent Greif and Coping table modified from:

Drotar, D., Baskiewicz, A., Irvin, N., Kennell, J., & Klaus, M. (1975). The adaptation of parents to the birth of an infant with a congenital malformation: A hypothetical model. Pediatrics, 56(5), 710-717.

The Parent Grief Model includes reactive and active roles. Reactive roles include the parent’s potential initial feelings and reactions to a situation, whereas active roles tend to be the result of processing, understanding, and reframing of the experience, and adaptation. Active roles require that a person initiates and takes personal responsibility for their actions; this requires self-awareness and emotional energy. We encourage you to read through the model and consider your feelings, behaviors, and experience in this light. Reflect on your potential grief and coping strategies in order to navigate your own emotional response to the CHD.

Coping

Parents may usedifferent coping behaviors. Parental coping is one of the most important components of raising a child with CHD. This is because children learn coping strategies from their parents. Coping with grief over your child’s CHD may involve engaging with the source of your grief, or disengaging with it. Parents who adopt “engagement coping” learn to behave in ways that will help their child. Engagement coping includes taking personal control, seeking resources, seeking community, and acknowledging and discussing the CHD.

Engaging requires emotional effort and energy – it is not easy – but your child’s self-esteem is worth the effort. When parents effectively cope with their grief by engaging, they help their child build resilience and resourcefulness. Parents who disengage to cope may cover their child’s hands when in public, blame others, or may avoid discussing their child’s CHD. When parents cope by disengaging, they may send negative messages to their child about their CHD.

Engagement coping can help parents convey to their children that CHD is a positive aspect of their existence and not a source of shame. This helps their child develop their own effective coping strategies. We understand engagement coping takes time and emotional effort. Your Pediatric Hand Team is here to support you.

Stigma

Stigma is the assumption that people with body differences are “abnormal” and considered “less than” with a variety of social limitations on them. People may stigmatize children with CHD by verbal or behavioral actions. For example*: a child with one hand enters music class in grade school and tells the music teacher that they want to try the violin. Stigma is the (conscious or subconscious) belief of the music teacher that children need two hands to play the violin. This is conveyed with the verbal response to the child, “The violin is not going to work for you.” It is also expressed by the behavior of the music teacher selecting the tambourine for the child to play instead.

In this scenario, the music teacher made assumptions and decisions based only on the visual appearance of the CHD. The teacher did not ask the child to try to play the violin or work to explore adjustments or adaptive strategies. Furthermore, the child was not asked if they were interested in the tambourine. If playing the violin is an option for other children in music class, then denying the child with one hand the opportunity to explore playing the violin stigmatizes their difference. This stigma excludes them from opportunities that children without a CHD are entitled to experience.

Parents may have subconscious stigmas about CHD that impact their ability to imagine a future of happiness and meaning for their child. They may assume that people with CHD will have a difficult life, are unable to participate in society, and may have a difficult time doing activities. Parents may underestimate their child’s potential.  When parents tell their child, “No, you cannot try the monkey bars” they may assume that their child wont be able to hold on, are afraid they will be injured, or may want to alleviate their child struggling with the activity in pubic. But they may limiting the opportunity for the child to try the activity and explore adaptations and modifications with parent there as a support.

It is important to acknowledge that there will be activities that your child finds difficult, or impossible, or has no interest in doing. However, if they are interested in an activity, and the time, space, and energy for support and adaptations can be made, then maybe give the activity a try. Allow your child to participate in the decision regarding whether they continue the activity, instead of deciding for them based on their CHD. Parents who want more information about how to effectively support their child should talk with their Pediatric Hand Team, and review the Personal Experiences Page and Resources Page.

Parents may also experience stigmatization of their child by association. This may happen when someone reacts to their child’s CHD. Stigma withers when people become aware of it in themselves and others and challenge the thought processes that created it. Stigmas are often untrue and can be defeated by education and awareness.

CHD is a component of human variation, and people with CHD are worthy of equal social belonging. Awareness and education can consume a lot of emotional energy. It may help to stay in control of conversations and interactions that focus on the CHD. Know that parents can share as much or as little as they and their child’s desire at any given time. We encourage you to check out Social Stories and Creating a Story on the Child Experience Page as a way to navigate disclosure conversations with your child.

*Example adapted from a childhood experience of Rachael Schlee, a person with a CHD and used with permission.

Making Medical Decisions

We know that making medical decisions for your child is difficult. Many surgeries are elective and are designed to improve the function and / or change the appearance of your child’s hand. Some operations have predictably good outcomes, whereas others are less predictable. Some operations are new modifications, without good information about outcomes.  All surgery has risks, although the risk of hand surgery is usually very low.

When making medical decisions, include your child as much as possible and as appropriate for their developmental age and maturity. Sometimes medical decisions need to be made while the child is too young to be involved in the process, and this responsibility can be transferred to the parents*.

Parents are more satisfied with decisions regarding their child’s treatment when they can process and explain information. As well as when their own emotional and social needs are met. You know what is best for your child, your family, and yourself. Your Pediatric Hand Team is here to support your decisions by providing information, various options, and answering all of your questions.

*Sarah’s parents made a medical decision for surgery when Sarah was 13 months old. Sarah’s father wrote Sarah a letter explaining the operation, the desired outcomes, and the potential risks. The letter explained their decision-making process. The letter asked for Sarah’s forgiveness if she did not agree or would not have chosen this surgery when she grew up. Both Sarah and her parents find this letter comforting. Sarah often recommends this type of communication between parents and their children when parents are struggling with making medical decisions for their child.

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For questions, comments, or concerns please email ncl.chd@shrinenet.org

Page last revised on August 27, 2019.

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