The young couple entered the ultrasound suite in excited anticipation of seeing their first pictures of the little one inside. Linda and Brian had an earlier ultrasound at about seven weeks, but this would be the first real chance to see their baby. It was also the first grandchild for both of their parents. Everyone wanted pictures of this newest addition to the family.
Mary, the sonographer, ushered them into the room as they chattered excitedly about whether it might be a boy or a girl. Brian teased that he hoped it was a boy because "one princess was enough."
As the warm gel was placed on Linda's abdomen, both parents eagerly looked at the special flat screen monitor overhead. As Mary scanned on the baby she immediately knew something was very wrong. The baby's skull was not intact and she knew this was an anencephalic baby.
She immediately stopped scanning and came to get me. The parents glanced at each other with worried looks. "Is something wrong with our baby?"
A Time to Weep
I walked into the room to inform them of the grim findings as gently as I could. "I am afraid that your baby has what is called anencephaly, where the skull does not develop. It is the most serious form of spine defect and is always fatal," shared with them.
"You mean my baby is going to die?" asked Linda.
"Yes, babies like this may live for a few minutes, a few hours or even a few days, but they all die shortly after birth," I answered carefully. Linda started to weep gently as her husband held her.
"Let me give you some time together and then we can finish the scan. After that we'll take some time to talk about your options," I said. I exited to allow them some privacy and told Mary to bring them into my office right after finishing the scan.
A Time to Search
Soon after, Brian and Linda came to meet with me and I explained that there were several options open to them. I made sure they knew they could legally terminate the pregnancy by an abortion, since this is required for true informed consent. I also told them that they could choose to do nothing. However, I told them I would recommend Perinatal Hospice.
Perinatal Hospice is a concept that I helped pioneer to offer end of life care, modeled after the hospice concept, to support families receiving a prenatal diagnosis of a terminally ill fetus in utero. I told them we would put together an interdisciplinary team of myself, sonographers, nurses,
neonatologists, chaplains, and social services to care for them and their precious baby.
At that point, they both breathed sighs of relief. They shared they were a young Christian couple in training for missions work and they would never abort their baby no matter the findings. What a miraculous moment! We immediately had a time of prayer for this lovely couple and their special child.
A Time to be Born, a Time to Die
The next few months were spent in difficult visits. Often Linda would tear up and we spent time in comforting her and her husband. We took many pictures of their lovely little girl, Sarah Grace. Her parents saw her wave at them, move her legs, and do all the things babies do. Then came the fateful day at about 34 weeks when we found no heartbeat. Sarah Grace had gone to be with the Lord as a child of grace.
Linda went to labor and delivery for induction and gave birth to her beautiful little girl, Sarah Grace. She and Brian had time to hold their baby and the grandparents met her too. As difficult as this was, both parents felt grateful God gave them a better way to care for their child.
A Time to Embrace
Pastors and chaplains play a key role in the care of Perinatal Hospice patients. Many of the families we see with infants who will die in the womb or soon after birth suffer a crisis of faith and wonder what God is doing. Our young couple spent significant amounts of time with their supportive pastor who helped them understand how God does work through suffering.
They witnessed the undeniable grace of God in their lives by showing how to love their baby in spite of her fatal diagnosis. Pastors may facilitate Perinatal Hospice care by reading an article or two on the subject and sharing with their medical community the availability of this life-affirming and family centered care.A Time to Build
Pregnancy Resource Centers are in close contact with women who are making decisions about their pregnancies and offering multi-faceted supportive services. They are therefore in an excellent position to embark on a wonderful ministry to women who face an adverse perinatal diagnosis. This young couple's story demonstrates how families are empowered to affirm the life of their child, if merely given the right choices.
Obtaining information about Perinatal Hospice and exploring how they might initiate hospice care in their communities is paramount for PRCs. Several models may be used: hospital/clinic based, hospice-based, or freestanding. All the models work well and each community needs to assess how they could provide this culture of life ministry.
Volunteers can be trained to become labor coaches or doulas in labor and delivery. Working with the community and being identified with a particular hospital system or hospice might be the best approach for some areas. Or, a freestanding hospice might fulfill that need. Becoming part of the healthcare team by providing resources and support to the physicians and hospitals is key to the success of any program. Because many physicians are not aware of Perinatal Hospice, education is also a vital need.
A Time for Peace
Patients who receive an adverse diagnosis during pregnancy have a right to understand what care options they have, and when given the option to carry to term, they overwhelmingly choose to do so - 80% choose the supportive services of Perinatal Hospice when it is offered!
As further confirmation that this is a healthy choice, I've never had a family come back to me afterwards to say they regretted choosing Perinatal Hospice. On the other hand, however, if not given any other option than to terminate, 80% will choose to abort, and the following story illustrates the lasting impact that choice can have.
A colleague of mine told me about a patient in his practice who had received a fatal diagnosis during pregnancy. Amazingly, her sister was also pregnant and also found out that her baby would die soon after birth. My colleague's patient chose perinatal hospice and her sister chose to terminate. After the memorial service for his patient's baby, the woman's sister came to her and said, "Now I understand. You have a story to tell, but I have a secret to hide."
Byron C. Calhoun, MD, FACOG, FACS, MBA, is a Professor and Vice-Chair of the Department of Obstetrics and Gynecology at the University of West Virginia. Dr. Calhoun is board-certified in general obstetrics and gynecology and in the sub-specialty of maternal-fetal medicine. He is a pioneer in the Perinatal hospice movement, an alternative to abortion for fatal fetal anomalies.
Dr. Calhoun suggests that further information on the types and number of hospices available may be found at www.perinatalhospice.org. An excellent source for community resources and suggestions regarding how to build your own local hospice may be found at www.thehavennetwork.org.
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