Facing a Terminal Fetal Diagnosis
You have learned the heartbreaking news that your baby is not expected to survive. You likely feel numb and have trouble believing that your child will not go on to live a healthy life. You may also feel quite pressured to make a decision regarding the outcome of your pregnancy. Many parents are not aware that their child has a terminal diagnosis until mid-way through the pregnancy. At this point, parents are presented with the option of termination. Depending on where you live, you may feel rushed to make a decision about the outcome of your pregnancy due to your state's limitations on pregnancy termination. Even parents who have always considered themselves to be pro-life may struggle with the decision, since there are maternal health and mental health variables to consider. Parents facing this agonizing choice need to be given time to consider their options in an unhurried way. Reading stories from parents who've carried to term, as well as parents who have chosen to terminate, can be helpful.
Carrying the Pregnancy to Term
You may decide that it's best for you to carry your pregnancy to term. The resources below can help you navigating that journey. Check out the website www.carryingtoterm.org for more information.
Perinatal Hospice Services
Perinatal hospice services support parents during pregnancies when it is known that the baby is not expected to survive. They help parents plan for the birth, help parents cope with their grief, plan how to spend time with the baby after birth and help make funeral plans. You can find local resources at www.perinatalhospice.org.
In Manhattan, KS, our nearest programs are in Kansas City:
The University of Kansas Medical Center's KU Kids Healing Place has perinatal hospice services.
Children's Mercy of KC's palliative care services are another resource
Infant Loss Doula Services
Birth Waves is a non-profit organization providing support to families experiencing pregnancy loss. They can provide you with free doula services during your birth, planning for the birth and help working through the issues arising after a stillbirth. Their website is www.birthwaves.org and their phone number is 620-921-3132. Our local contact is KayLee Proctor. Her contact is: firstname.lastname@example.org
Terminating a Pregnancy
Once you hear that your baby is not expected to survive, you may decide that it too physically or psychologically risky to continue your pregnancy. In Nebraska and Kansas, the limitations on pregnancy termination are at 20 weeks, which may be exactly when you are learning of your baby's condition and prognosis. Missouri has a more flexible deadline. Many mothers from our area go to Kansas City for termination services. For those later in pregnancy, Colorado has no time restrictions on pregnancy termination.
After the Loss: TFMR
Infant loss is not something we talk about in our culture. As such, most parents feel alone in their grief. Parents who have ended a wanted pregnancy may feel even more alone than parents who have had a miscarriage or stillbirth. Many of the infant loss resources out there aren't inclusive of parents who make the choice to terminate their pregnancy. It's especially important that you find some good support for yourself during this difficult time. To find online resources, try searching under the term "TFMR" (termination for medical reasons.) Check out our list of resources for parents who have terminated for a medical reason.