Perinatal Hospice -
A Rational Approach to a Devastating Problem
by Tim Wiesner, MSHA, ARNP
The expectant couple is giddy with anticipation. The long-awaited day of their first sonogram has finally arrived. Family and friends are eagerly awaiting those black and white images of that little baby - the promise of things to come.
The doctor is all smiles as he begins the ultrasound examination. His brow suddenly becomes furrowed. The happy occasion has suddenly turned solemn. "Your baby has an abnormality, it won't live.you should consider termination".
Their world has collapsed. The giddiness is replaced with profound shock and disbelief. Questions flood their mind. Is it due to something they've done or didn't do? Is it genetic? Will future children be ok? Do we have to terminate? Will it hurt me to carry this baby? Is the baby in pain?
Unfortunately, this scenario plays itself out 10,000-15,000 times each year in the United States to mothers and families with in-utero diagnosis of a lethal anomaly. These include chromosomal abnormalities such as Trisomy 9, 13 and 18, anencephaly, etc. Many of these mothers and families receive very little support other than a recommendation to terminate. They may even face abandonment by their physician if they choose to ignore that recommendation. What will they do?
Enter Perinatal Hospice. This concept was introduced by Byron C. Calhoun, MD, a specialist in Maternal-Fetal medicine at Madigan Army Hospital and introduced into private practice medicine by Scott Stringfield, MD of Choices Medical Clinic in Wichita, Kansas. Perinatal Hospice allows for a continuum of supportive care, for mother and baby, from the time of fetal diagnosis until the natural death of the child. Follow-up care and counseling is also provided.
Rather than kill a baby that will supposedly die of an abnormality, the thought behind Perinatal Hospice is, if your baby is going to die anyway, why kill it? Astonishingly, approximately 2/3 of the in-utero conditions considered worthy of termination are either more severe than originally thought or, absent.
Initially, the patient is referred to a specialist in Maternal-Fetal Medicine who, due to sophisticated testing equipment, can render a more accurate diagnosis than may be possible in the office of a Family Physician or OB/GYN. Once the accuracy of the diagnosis is confirmed, the birth parent(s) can be given specific information as to the nature, duration, severity, and outcome of their child's condition. Now, specific plans can be made for the remainder of the pregnancy and delivery. Relatives or significant others can be notified. Special events of religious significance may be planned. Time is also available for funeral arrangements. Support groups of patients and family members with similar conditions are made available to help combat isolation and alleviate uncertainty.
During the pregnancy, the birth parent(s) are encouraged to visit with the Hospice Physician, Nurse or staff as often as they deem necessary. Emotional support is a priority. Home phone numbers are given for after-hours encouragement. Frequent sonograms are made available, at no charge, to monitor development and help mom bond and spend time with her child. A support group of parents in similar situations is made available for as long as is necessary. The delivery can be videotaped. Hand and footprints can be cast in plaster. Locks of hair can be snipped for future memories. Photo albums are assembled. This is a celebration of life - however short. If possible, the baby can nurse and be held by the rest of the family. As one patient said, "God took the baby when He thought it was time."
An accurate diagnosis of a lethal, in-utero abnormality is a devastating event. Perinatal Hospice provides the birth parent(s) with dear memories and the satisfaction of knowing that they did all they could for their child. As has once been said, love doesn't sacrifice the other, love sacrifices for the other.
Observations on a Short but Cherished Life
by Tim Wiesner, MSHA, ARNP
I have just been privileged to witness the delivery of a Trisomy 9 baby, a baby with a lethal anomaly. Having just witnessed that miracle of birth, life and death in the space of one short hour, I defy anyone except perhaps the most calloused of mind and heart to declare, "this child should've been aborted." What an impact to have seen the tenderness of the mother and father as they held and gently caressed their little one. I observed the tremor in their hands as they would stroke her forehead as tears inched down their faces. To feel for the father as he looks into the eyes of his baby girl, too weak to visibly struggle, his gaze locking onto his daughters eyes which convey a silent and earnest pleading for life and the chance to know her daddy. To see this little baby's brother and sister as they gaze inquiringly into that little face, smiling as they welcome another playmate into the family, albeit temporarily. To witness the touching scene of a robust grandfather as he holds his delicate little 3# granddaughter in his calloused hands. The entire room is quiet with a silent reverence for this saga of birth, life and death as the little baby is passed from one family member to another, each one trying unsuccessfully to hold back the tears as the little girl herself ceases her faint struggle and passes from life unto death.
Even physicians who are experienced in the care of newborns have very little expertise in the care of a Trisomy 9 baby. Why? It's because these little babies are aborted - as are most others with lethal anomalies. The physicians don't have the opportunity to care for them. The family is deprived of the loving memory of having done all they could for their child. The children are left with the message that "mistakes" in their family are punishable by death. The grandparents are excluded, as if they were strangers, rather than participants in this emotionally charged family event. All because someone has decided that not only is this a life not worth living but a life not worthy of being born. A life not to be shared by loved ones but to be extracted from the womb and discarded.
While such a calloused view of life may be sanctioned by our legal system, presided over by religious leaders for choice, and approved by the American Medical Association, our omnipresent, omniscient, omnipotent God is silently recording each event and each participant for the coming day of judgment when all of our actions and motives shall be brought to light and these little ones shall be avenged.