Carrying to Term
This is a very difficult time, and unfortunately, there is no magic choice that will make this experience easier.
These decisions are extremely difficult and deeply personal. You deserve to have your decision about your child’s health respected by your healthcare professionals. And your child, regardless of his or her diagnosis or prognosis, deserves to be treated with dignity and compassion.
Saying goodbye early is a heart-wrenching decision for many parents, and parents who make the decision to interrupt their pregnancy usually do so because they feel it is in the best interest of their child. Many view it as making an “end-of-life” care decision prenatally rather than during birth or in a neonatal care setting.
Parents who say goodbye early often feel that carrying to term was not possible for them or their families due to medical concerns for the baby, such as not wanting to risk their child suffering in a painful dying process, or concern over the anguish that they feared carrying to term might cause their surviving family members, especially living young children.
For some mothers, saying goodbye early may be medically necessary to preserve their ability to have more children in the future (although it is very rare for a Trisomy 18 pregnancy to cause harm to the mother’s physical health).
Others have informed us that they felt they were not fully educated by their doctors about the whole range of outcomes for children with prenatal Trisomy 18 diagnoses and thought that termination was their only real option. Not surprisingly, these parents often experience more complicated and conflicted grieving, feeling that they may not have made fully-informed decisions for their child. They may grapple with guilt or regret. These parents may express wishes after the fact about what might have been if they had been able to experience some time with their infant alive after giving birth, however brief, while still preparing for the possibility of a stillbirth.
Don’t feel pressured to make any rushed decisions by healthcare providers or anyone else. Take your time and learn as much as you can so you can make informed decisions. Ask as many questions as you want and make sure you understand the answers. Don’t be afraid to advocate for yourself and your child. Request additional testing, appointments, or resources if you feel your need more information.
Connect with others who have been in your shoes. Reach out to those in the Trisomy 18 community to learn about their experiences. Our private Facebook group allows you to talk to parents about their experiences. Don't be afraid to ask the hard questions. Their experiences can be invaluable for helping you understand your options.
Remember, the decision you make will be the right one for your child and your family.