Family Planning

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Thinking about another pregnancy and child may produce conflicting feelings: fear and hopefulness, trepidation and desire. This may be especially so if there is a known inherited condition or conditions. Each family is unique in how they approach this decision. Gathering information about the risk of recurrence and testing options is a good way to start the process.

Your Team:

Obstetrician (OB)

A doctor who specializes in pregnancy, childbirth, and a woman’s reproductive system.

Genetic Counselor

A specialist in evaluation, diagnosis, and management of patients with hereditary conditions.

Psychologist

A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Spiritual Leader

An individual who leads and/or guides individuals or groups coping with life experience and challenges.

An obstetrician (OB) can refer you to a genetic counselor and may help coordinate any recommended screening or testing options. A genetic counselor can educate you on the inheritance pattern of your child’s condition and the benefits and limitations of different screening or testing options. A psychologist and/or palliative clinician can provide space to talk through your worries and concerns, especially if you and your co-parent have different ideas. A spiritual advisor, if you have one, can help you explore the role of your spiritual or religious beliefs in the decision process.

The decision whether to have another child will likely bring up a complex web of thoughts and feelings. You may face decisions that challenge you morally or spiritually. You and your co-parent, if you have one, may find that you need to process some differences in your ideas and assumptions.

These considerations are closely related to your vision for your family prior to your child’s diagnosis. You may naturally worry that you will deliver another child with a serious medical condition, especially if there are genetic factors in your child’s condition. You may have ideas about testing and wonder how you would react if the new fetus is affected. You may have thoughts about whether you would terminate a pregnancy, which brings its own feelings and complications depending on your belief system and what options are legally available to you.

You may also be concerned about how you will feel in the future, whether you try to have another child or decide not to try. The section on Regret may help you understand your feelings about this very natural response.

The ultimate goal is to find peace with whatever you decide. Here are some questions and options to think about as you consider whether to have another child.

What are your goals in expanding the size of your family?
Are you comfortable with the potential risks as you understand them?
Are you and your partner in agreement about this?
Try to think about the future—five to ten years from now. Will you be at peace with whatever decision you make now?

“It’s an enormous leap of faith. That was always true. With my first pregnancy, I had this image of walking toward the end of a diving board, and I just dive in and trust that I can swim. And now it’s like we know there are sharks in the water.“

– Laura, parent of Alden

Timing of a New Child

Timing in welcoming a new child is almost never perfect. It is helpful to consider any or all of these factors, perhaps to discuss them (and others) with a therapist or genetic counselor.

Your age
Prior difficulty conceiving or carrying a child to term
Ability to care for a newborn while actively caring for a child with medical complexity
Feelings about when you wish to make the decision—while a sick child is living, or after some milestone has been reached or the child has died
Thoughts about bringing a “replacement” child into the world (While many parents grapple with this, most learn that there is never a replacement for a child)

Genetic Testing

Certain screening or testing options are only available during certain timeframes, so it is preferable to meet with your clinicians prior to becoming pregnant. There also may be cultural or religious considerations that guide you. A genetic counselor or a spiritual leader can help you to explore the options and process your emotions.

Adoption, Donation and Surrogacy

Some families don’t want to risk the chance of having another medically complex child. You may wish to consider other options including adoption, egg/sperm/embryo donation or surrogacy. Reaching out to agencies to gather information could be another step to take in this process.