Pregnancy is normally a time of joyful expectation of welcoming a new life into the world. But news of a new potential disability or life-threatening condition can be devastating.
Many years ago, during my second pregnancy, my unborn child was diagnosed with a brain malformation so severe that she was expected to die at birth. She was diagnosed with a neural tube defect (NTD) called anencephaly, where the brain of the baby is exposed or missing parts of the brain. The doctors pressured me to abort my child. I loved my daughter regardless of the diagnosis; she was my child, and abortion was just not an option. I felt alone, lost and hopeless when pressured to abort my child.
The prenatal diagnostics screening is quickly becoming a routine part of modern medicine. A simple blood test can be done to screen for such congenital defects and malformations. Early detection can save the life of a newborn. In some cases, the prenatal diagnosis may indicate that the baby is expected to die before or shortly after birth (there is so much to be done in such a short time.)
Parents face a somber reality that their first hello may be quickly followed by their last goodbye. Family and friends want to provide support, but they just don’t know how. A model of care has been developed specifically for families whose infant is likely to die before or after birth. Often called “perinatal hospice,” it’s a way of caring for both the baby and the baby’s family before, as well as after, birth.
I work in a community center assisting pregnant and breastfeeding mothers, mostly migrants and refugees. In the last 10 years I’ve witnessed a great need for a support group for families from different backgrounds, cultures and those who have less resources and advantages in the community. Published research suggests that limited English proficiency has been shown to be a barrier to enrollment in public assistance programs.
We lack adequate support programs for Spanish-speaking families, that help families navigate grief, and prepare for the impending death of their baby, provide mental and emotional support, and assist with funeral services etc. After my daughter’s prenatal diagnosis there was no support available from the medical community.
This is a very serious concern because families don’t receive the resources needed to make the most compassionate informed decision. Information should be provided in their native languages for better understanding and parents should not be pressured to make the decision to abort based on fear. Currently Rhode Island has only two programs available: “My Child, My Gift” run by the Diocese of Providence, and one at the local hospital which I was never offered during genetic counseling. Providing compassionate hospice care allows the families to focus on these precious moments with their babies. A time to honor, to celebrate and to show them dignity and respect until their natural death.
My goal will be to develop a loving and compassionate support program for families receiving and carrying a child to birth after a prenatal life-limiting diagnosis. I would like to help others and support families in making lasting memories. Memories that would help families grieve and heal after the loss of a child. Together we can develop a safe space for fathers and mothers to be able to share their precious gift, their child. This will be a compassionate group that celebrates the dignity of all life, the unborn, the sick and disabled children. This program would be available to all families, but today the greatest need is in educating Spanish-speaking families about their rights and educating them about perinatal hospice. Also providing them with bereavement and prenatal diagnosis support as soon as they receive the diagnosis is important.
I can testify that carrying a pregnancy with a life-limiting diagnosis is ultimately better for the mental health of the mother. I carried, nurtured, and gave birth to my daughter not knowing how long she would live, or how she would change the world, but the time we had her with us changed our family forever. We were able to know her and provide the dignity she deserved until the moment she died in my husband’s arms, surrounded by those who loved her. None of us know how long we will live. But all of us deserve to be loved. While my daughter’s life was short, she was surrounded by love her entire life.
Sonia Aldana Morales is an author, bilingual public speaker and a community advocate for prenatal diagnosis service and palliative care for babies who are expected to die after birth. She and her family live in Rhode Island.