Healing

Recovery after the death of a child comes with time. It is possible to regain control of your life and find renewed hope for the future. After such a difficult journey, many discover new strengths and have more insight on life.

For couples who are suddenly left childless, the grieving process can be especially isolating. It may be difficult visiting friends with children and responding to strangers who ask "Do you have children?" or "How many children you have?” CCF offers family matching to parents interested in speaking to other parents who have experienced the same loss.

Approaching the Future

Some parents find that writing affirmations are motivational in redirecting their life. Affirmations are simple, positive statements that you feel strongly about, such as "I will be open to new ways to starting a family," "I am strong and can grow from this pain," " I resolve to help other affected children and families in need of support," or "I will cherish each moment of my life with my surviving family." Doing this simple exercise may help restore your energy and improve your outlook on life.

You can give structure and direction to your life by setting new goals. This may mean taking educational courses, picking up a hobby, or donating time to a cause that is meaningful to you. Moving on with life does not mean forgetting or betraying the memories of your child. Instead, it signifies a new life guided by the memories of your child.

Remembering Your Child

Every parent wants to keep their child’s memory alive in a special way. It might be a small personal gesture or a more public contribution in their honor. For some families, this brings closure and acceptance. Families have chosen to memorialize their child in different ways. Below is a list of suggestions.

  • Planting a tree or dedicating a bench at a nearby park or at your child's school.
  • Giving a gift to the hospital where your child received care, your child’s school, or a place associated with his or her favorite activity.
  • Doing something special on your child's anniversary or birthday such as lighting a special candle or hosting a memorial lunch.
  • Sponsoring a fundraiser in your child's name to benefit a charity like the Children's Cardiomyopathy Foundation.
  • Setting up a scholarship in your child’s name.
  • Creating a memory book or photo album to share with other family members.
  • Writing a poem, story, or song and submitting it to a newspaper or magazine.
  • Making your own memorial item (pottery, painting, quilt, furniture).

Having Another Child

At some point, the question of whether to have another child may arise. Some parents want to immediately try for another child while others are hesitant about taking another risk so quickly. Some couples choose adoption as an alternative way to start a family. Deciding how to build a family is a very personal decision. You and your partner should take time to discuss all the issues so that the best decision can be made for your family.

Your readiness to try again will depend on several physical and emotional factors. Physical factors include your age, your ability to get pregnant, ease of labor, and other health concerns. Emotional factors include your partner's readiness, your ability to deal with the uncertainty of your pregnancy, and whether you have had enough time to grieve.

Understandably, concerns about the health of your future children will surface. Working with a pediatric cardiologist and a geneticist can help to determine your future child’s risk for inheriting cardiomyopathy.

  • In autosomal dominant conditions, one parent carries a mutated gene, and there is a 50% chance of passing cardiomyopathy on to their child.
  • In autosomal recessive conditions, both parents carry a mutated gene, and there is a 25% chance of passing cardiomyopathy on to their child.

The best time to speak to a geneticist and pediatric cardiologist is prior to conceiving. They can review available genetic testing options, as well as, the role of pre-implantation genetic diagnosis and in vitro fertilization (IVF).

Pre-implantation genetic diagnosis (PGD) utilizes IVF technology to create embryos in a laboratory, which are then screened to see if the genetic mutation for cardiomyopathy is present. Parents can then choose to implant the embryo(s) that do not have the mutation. The decision to have PGD is a personal one for parents as the process can be costly, time consuming, and emotional.

Another option for family planning is domestic or International adoption. The process and requirements vary by state and country, but the Child Welfare Information Gateway, a service of the Administration for Children and Families, U.S. Department of Health and Human Services, has general information on the adoption process and requirements.

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