Incompatible with life, compatible with love

Friday, 17 February 2017

Around a dozen courageous “Warrior Moms” recently testified on a small, but deeply moving piece of legislation introduced by State Senator Joni Albrecht, representative of Legislative District 17 (Wayne, Thurston, and Dakota counties). The bill—entitled the Compassion and Care for Medically Challenging Pregnancies Act—runs the gamut of human experience and human emotion.

 

LB506 would provide opportunities for a mother to receive information about perinatal hospice care when a physician diagnoses their unborn child with a lethal fetal anomaly that would likely result in the loss of their baby within three months after birth.

According to www.perinatalhospice.org, perinatal care is “an innovative and compassionate model of support for parents who find out during pregnancy that their baby has a life-limiting condition.... Perinatal hospice incorporates the philosophy and expertise of hospice and palliative care into the care of this new population of patients.” 

Perinatal hospice care seeks to provide a comprehensive and multidisciplinary team approach in providing for the medical, psychological, emotional, and spiritual needs of the baby and the family. The team approach can include experts and professionals such as neonatologists, NICU staff, clergy, social workers, genetic counselors, and midwives.

Perinatal hospice care seeks to provide the proper interventions to benefit the life of the child and provide comfort to the family. This could include interventions such as birth planning, emotional support, and surgery.

With the increase of prenatal testing, mothers and families are finding out more often and earlier in their pregnancies about their child’s medical anomaly. As Dr. Robert Bonebrake, a maternal-fetal medicine physician, noted in his written testimony on LB506: “Unfortunately, when given a serious medical diagnosis during the early stages of a pregnancy, oftentimes parents are given minimal options. Unfortunately, it is not uncommon for women and their families to be unaware of the compassionate care available to them through perinatal hospice services.”

LB506 seeks to remedy—in its own little way of public education—the lack of information. The provision of information helps mothers and their families confront the mix of emotions they are experiencing as they feel the joy and struggles of carrying their baby, and also the sadness, confusion, helplessness, and fear of learning that their baby is suffering from a lethal fetal anomaly.

The Compassion and Care for Medically Challenging Pregnancies Act provides information on the Nebraska Department of Health and Human Services’ website, in addition to the creation of an information sheet that may be distributed to mothers. The type of information that would be provided on a website and information sheet include a statement, a general description of the services available, and contact information about perinatal hospice care services.

An understandable concern that was raised at the committee hearing was whether mothers and families across the state could have access to perinatal hospice care services or whether such services are limited to certain geographical areas. While there are certainly greater services in urban areas such as Omaha and Lincoln, perinatal hospice care is a service that can be provided across the state, especially as telemedicine services advance. 

Fuller access may require further education for providers in more rural areas, but training and education is readily available in Nebraska. For example, Healing Embrace, a perinatal hospice education and training group from Omaha, trains individuals who would like to bring perinatal hospice care to their community. Healing Embrace can also place women in touch with Nebraska-based support.

To return to the courageous “Warrior Moms” who provided testimony, thank you for the beautiful testimony you provided in the committee. You revealed to the State of Nebraska a prophetic witness about the sacrifice and courage it takes to continue a pregnancy that will result in joy and sorrow, life and death. Thank you to all those mothers, fathers, and families who walk this journey with a trust in the Lord and His Divine Providence. In a special way, I thank my own wife for her courage, as we lost our own little girl, Therese, after two weeks of life outside the womb. 

As I have quoted before: “Those who go out weeping, bearing the seed for sowing, shall come home with shouts of joy, carrying their sheaves” (Ps. 126:6).