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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 can provide space to talk through your worries and concerns, especially if you and your co-parent have different ideas.
Family Planning
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After having a child with a serious medical condition, it may be difficult to think about another pregnancy, particularly if the condition is inherited. There may be conflicting feelings of fear and hopefulness, trepidation and desire. There are no right or wrong answers, as 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.
ESP Envisioning Your Family
The decision of whether or not to have another child can evoke many feelings. Considering bringing another child into your family is closely related to what you had envisioned for your family prior to diagnosis. The consideration will likely involve the possibility that problems will arise, especially if there are genetic factors in your child’s condition. 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 co-parent 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?
Timing of a New Pregnancy
Your circumstances may be a consideration, especially if you are older or have had difficulty conceiving or carrying a child to term. Some parents want to make this decision while their sick child is living, and others wish to wait until after their child has passed away or until some other milestone has been reached. Those who are actively caring for their child may worry about the responsibility of caring for another child, especially a newborn. Some may feel that it is unfair to bring a new child into a family that has challenges and where attention may be divided. Those who have lost a child may feel guilt at the prospect of bringing a “replacement” child into the world. (Most families learn that there never is a replacement for the child who has died.) It is helpful to consider any or all of these factors, but timing in welcoming a new child is almost never perfect. It can be helpful to discuss this with a therapist or genetic counselor.
Genetic Testing
If the condition can be controlled for or diagnosed prenatally and you wish to have genetic testing, you may consider in vitro fertilization (IVF) with preimplantation diagnosis, preconception testing, or prenatal testing during pregnancy. Given that different screening or testing options are only available during certain timeframes, it is best to meet with your clinicians prior to pregnancy if possible. 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, Sperm Donation and Surrogacy
For some families, an alternative feels preferable to taking the chance of recurrence or pursuing prenatal testing. If one partner is a known carrier or there have been difficulties in prior pregnancies, adoption, sperm donation or surrogacy are other options. Reaching out to agencies to gather information could be another step to take in this process.
ESP The process of deciding to have another child after having one with a serious illness will likely bring forward a range of considerations. You will likely face decisions that may challenge you morally or spiritually, and be uniquely tied to the vision you had for your family. You and your co-parent may also find that you need to process some differences in your feelings and assumptions.
You may have ideas about testing, and wonder how you would react if it were discovered that the fetus is affected. You may have thoughts about whether you would terminate a pregnancy, which brings its own feelings and complications depending on your unique belief system and what options are legally available to you. And whatever you are told, you may naturally worry that you will deliver another sick child.
You may also worry about how others will react, or how you will feel in the future, whether you try to have another child or decide not to try. These are natural responses given what your family has already experienced. Discussing your concerns and questions with a therapist and genetic counselor may be helpful.
