Parent Experience

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(Photos of kiddos)

Many parents report a state of shock when first learning the news of their child having a congenital hand difference, whether this be after having an ultrasound or at the time of birth. This news is
often not prepared for and many parents share that they felt under supported with resources. They also said they felt isolated and had difficulty imagining a future for their child.

We are here to help support you.

The term “parent” is used in this website to be inclusive of any person taking on a parenting role for a child with a congenital hand difference, whether this be biological parents, step-parents, adoptive parents, legal guardianship etc. This content was developed to address the role and experience of parenting and can apply to anyone taking on that role.

Imagined Future

During pregnancy or expectation of a new child, often times parents will begin to bond with their child; developing a future for them, envisioning their first day of school, riding bikes, family vacations, and first dates . Often times parents image a ‘perfectly healthy baby’ with the notorious phrase ‘10 fingers and 10 toes.’ Having a child with a congenital hand differences seems to challenge this expectation, causing emotional turmoil and stress. Parents often begin to worry, unsure of how their child will fit into this “imagined future.” They often do not have family, friends, or may not have seen people with CHD. Parents may begin to ask questions like “How will my child ride the bike?” “Will my child get married?” “How will my child tie their shoes?” Rest assured, your child will engage in all of these things should they want to, many times in creative ways. The truth is there is no “fitting in” but rather rethink a future where the child belongs and the number of fingers and toes are irrelevant.

We encourage you to check out this blog (link) and read stories of parents and children/teens/ adults with CHD. Take time to review their experiences to develop a new positive narrative and imagined future for you and your family.

Grief

Often times when first discovering the CHD, there is a strong emotional reaction from parents and family members. The literature suggests that parents enter into a grieving process to
mourn the loss of the ‘expected hand’. The following model is adapted from the Elizabeth Kubler-Ross Model of Grief and the Hypothetical Model of Adaptation of Parents to Birth of an Infant with a
Congenital Malformation as a way to organize and understand various feelings parents may have. Know that grief is not a linear process and the phases do not necessarily occur in succession. Parents
may experience all phases at one time, may only experience parts of a phase, may experience none of the phases, or may oscillate between phases. The experience is person dependent. Some parents do
not experience grief, while others experience grief for many years. If the experience of grief is negatively impacting your daily life we recommend communicating this to your health care professionals
in order to develop effective supports for you and your family.

Image: Model of Grief

Image 1: Parental Grief and Coping

The Parent Grief and Coping Model adapted from Model of Grief and the Hypothetical Model of Adaptation of Parents to the Birth of an Infant with a Congenital Malformation.

This model delineates between reactive roles and active roles. We encourage you bring awareness and identify your behaviors and experiences as active or reactive. This is a tool to assist in navigating your own emotional response to the CHD. We encourage you to explore the active roles with your child and we are here as a health care team to support you.

Coping

As parents are navigating the grief phases, they will take on various coping mechanisms and strategies. Coping has been described in some literature as engaging or disengaging. Engaging behaviors are
described as taking personal control over the situation or adapting the situation. Whereas, disengagement behaviors are described as avoidance or denial of the situation. Literature has shown
the coping methods and strategies parents employ impact and influence the child’s coping.

Engaging coping strategies include:

  • Seeking resources
  • Seeking community of people with similar condition
  • Kindly engaging with people who are curious about your child’s hand
  • Open dialogue to express thoughts and feelings with child, partner, family
  • Acknowledge CHD
  • Taking personal control of self-reactions
  • Provide safe spaces and supports for child to engage in various activities

Disengaging coping:

  • Use of substances
  • Parental discord/ blame on partner or partner’s family
  • Avoidance (of hand, of social situations, of responding to questions)
  • Ignoring CHD or pretending it does not exist
  • Limiting child from activities due to CHD
  • Anger
  • Hatred for self, child, or others
  • Hiding child’s hand

(OR Image 2: engagement and disengagement coping)

Engaging coping may require more emotional effort and energy, however is associated with less psychological distress whereas disengaging coping mechanisms are associated with negative psychological outcomes.

Stigma

Stigma is the presumption that people with body differences are marked as “non normal” and placed into an “out of group” with a variety of societal assumptions and limitations. Parents may not have personally experienced stigmas in relation to physical difference and they may have subconscious stigmas about limb difference due to the negative messaging they have received in their lives. These stigmas can impact the parent’s ability to imagine a future of happiness and meaning for their child and/or can limit perception of their child’s projected ability. Parents may also experience stigma by association when out with their child in the community. Bring awareness to all of the stigma, from parental stigma, and the stigma friends and family may have, and the stigma community members may have. Seek to challenge these thought processes. Stigmas are often untrue and can be combatted with education and awareness.

CHD is a component of human variation, and individuals with CHD are worthy of the same social belonging. It is understood that education and awareness can consume a significant amount of emotional energy, understand that you are in control of the conversation and can share as much or as little as desired at any given point. We encourage you to check out social narratives (link to social narratives page) as a way to navigate disclosure conversations with your child.

Making Medical Decisions

Making medical decisions and the health care system can be difficult to navigate. Include children as much as possible in the decision making process and as appropriate for their developmental age 2. Sometimes medical decisions need to be made while the child is too young to make decisions, this responsibility is transferred to the parents. Research suggests that parents are satisfied with their medical decisions and are able to outline effective thought processes/explanation for decisions when they have addressed their own social and emotional needs. You know what options are best for your child, your family, and yourself. We offer a variety of services and supports for you and your child along the way.

 

 

Patient Referral

916-453-2191
916-453-2111 (Emergency Referral)
916-453-2395 (fax)
referrals.ncal@shrinenet.org

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