Carrying to Term with a Genetic Anomaly

Carrying to term is an option that may not be considered initially – especially if your physician does not support it. This is a legitimate approach and you are entitled to make this decision. It is important to discuss all the ramifications of this option with your partner and decide whether this is something that you wish to do. It is a viable and understandable approach.

When you choose to “carry to term” here are a few of the considerations:

  1. Research the condition that you or the developing baby has
  2. Try to understand what the outcomes will be
  3. Will the baby survive throughout pregnancy
  4. Will the baby survive delivery
  5. Will the delivery in any way endanger your health
  6. How long will the baby live post delivery
  7. Can you work with your obstetrician/hospital to create a personal birth plan
  8. Is there a team at the hospital who will assist with the baby after the birth by providing comfort care for the baby and how would you like that comfort care to be
  9. Is there a team from hospice care who is available to you and other family members to provide guidance, assistance and support while the baby is dying
  10. How to involve family members – including siblings if you choose to have them involved
  11. How long will the baby be allowed to stay in the hospital and if the baby must be transferred, you need to decide if you would like the baby to come home or go to a facility where his/her condition and your plan will be supported
  12. What is the anticipated length of life for this condition
  13. It’s never too early to think about burial or cremation if you know what the outcome is going to be
  14. Some facilities now provide a team that will assist you through this entire process – but it may be incumbent upon you or your family members to do the research and create a plan that works for you

After your baby dies

It may not be known how long your baby will live with whatever fatal condition s/he has. Making all the preparations in advance as outlined above will give you control over a situation that is making you feel quite powerless. But after your baby dies, you may find yourself feeling very sad, yet also relieved. It will take time to digest the entire process and get some perspective. It is likely that you have support from family and friends who accompanied you on this journey. Along with the emptiness, you may also have a sense of “completion” of having seen this project from start to finish. This can leave you also feeling satisfied along with feeling sad. For people who have made this choice they tend to want to be a resource to others who are in the throes of making a similar decision or who are going through the actual steps that you’ve just completed. If you do want to be a resource to others let your local hospital know or notify this group so we can refer others to you.