Supportive Voice Vol. 10 No. 1 Winter 2004
by Kathy Carroll RN, BSN, CT
Kathy Carroll, RN, BSN, CTBereavement Coordinator, Infant Loss ProgramSt.Vincent HospitalFamily Life Administration2001 W 86th StIndianapolis, IN 46240klcarrol@stvincent.org. 317-338-2726
What happens to a family when they learn that their unborn baby is sick? What happens to a family when they learn that their unborn baby is abnormal and are told that he/she might actually die? For years prior to 1997, I had been providing support to families who experienced a miscarriage, ectopic pregnancy, stillbirth or newborn death. My experiences as a bedside caregiver and infant loss coordinator were called upon one day when a perinatologist asked for my assistance in providing guidance with a family who was expecting just such a child. Their son was diagnosed with anencephaly (a malformation of the skull and brain) and would not live for a long period of time following his birth.
Previously, I had not been asked to help families while still pregnant. This was all new to me in many ways, and, as with all new things, I was uncertain if and how I could help this family.
As caregivers we should be aware of what grief looks like when individuals or families receive “bad news”. What might they feel physically, emotionally, socially and spiritually? What possible help can we give them? I certainly had learned much about the grief process and actually journeyed this road personally a few times aside from my professional experiences.
Initially, I prayed for guidance, which did indeed help. Then I picked up the phone and called the family. What ensued was a tremendous journey for me and I would like to share and put into words what this experience looks and feels like.
As you can imagine, this family was devastated with the news of the impending birth and death of their son. It was extremely difficult for Mary, the mother, to believe that her son growing and kicking inside her would be born in a few months and then die, or die even before his birth. Mary asked, “What is God thinking?”
Obviously, I did not have an answer for that question nor was I about to try to answer it. So I listened to both Mary and Paul address their concerns, vent their anger and ask their questions. My first questions to Mary and Paul were, “What would you like for your son?” and “What is most important to you in your relationship with your unborn son?”
Both of them immediately responded with the wish and hope that their son could be born “normal”. Yes, they understood what the unltrasounds had shown and what their physicians were saying to them. However, they both believed in miracles and so that is what they both wanted as their number one hope and dream for their son. So I joined them in their hope and dream and also began praying for a miracle. This, on that day and since that time, has been my plan of action with anyone found in this situation with a baby diagnosed with fatal anomalies.
I proceeded to give them my office phone number and pager number and encouraged them to call me anytime with questions or concerns. This provided them with an open door of support. Finally, during that initial phone conversation, I set up a time to meet them personally to continue our journey together. (Of course, in addition to supporting their hope, I began to make preparations and plans to support them if their miracle did not happen.) Since they lived a couple of hours from the hospital we decided that after their next doctor's visit we would meet.
During the next three to four months, we met, talked on the phone and sent emails frequently. We began constructing a back up plan of action – what if their son was born and lived for a time with this fatal anomaly? What would our steps be in providing him with a loving, comforting environment? So, never losing the focus of praying for a miracle, we discussed many of the following topics: religious ceremonies in the hospital, birthing plan, comfort care and what that might look like, taking their son home and possible funeral plans.
As the delivery of their son came closer, the phone calls and emails increased. Naturally they were becoming more anxious, but so was I. By this time I was very involved with them, but was unsure of how much I was actually helping them with their journey. I knew that I could not relieve their anxiety any more than I could take their grief away from them if their son died.
Mary and Paul arrived at the hospital and a few hours later their son, Evan, was born. During the time that we waited for his arrival, we took a few moments and gathered at Mary's bedside and prayed. We prayed for the wellness and safety of Mary as well as for Evan. Evan, sadly enough, was born with anencephaly. Please note that most anencephalics live only a few hours if they survive the birthing process.
Upon Evan's birth we shifted our thoughts and prayers to our back up plan. Mary and Paul had asked to have Evan baptized so we proceeded with that ceremony. During his birth, baptism, etc. I was busy taking pictures for them. Mary and Paul kept Evan in the room with them at all times. All in all it was a beautiful experience. The atmosphere was very calm and comforting. They were able to spend many hours rocking Evan, bathing him, feeding him and yes, even changing his diaper!
We spent the next few days with the neonatologists discussing the plan of care for Evan. After a couple of days in the hospital the medical team, along with Evan's parents, decided that Evan could be taken home. Since home was not in our direct area, I arranged for their local hospice to provide additional support for them. Evan lived for nine days being visited by multitudes of family members and friends. Many pictures and videos were taken during this time as keepsakes for Mary and Paul.
Paul called me the morning Evan died. He cried and so did I. But, once our tears had stopped he thanked me so much for helping them come to the understanding that miracles do happen. How did he describe this miracle? What was he talking about? He said, “Kathy, the miracle we experienced with Evan was the gift of time. No, Evan was not healthy but we were able to surround him with love and provide him with a wonderful nine days. We will never forget this time that God gave us with him.”
That was in 1997. I learned a lot from Mary, Paul and especially from Evan. Will I ever forget him? Absolutely not!! As I have provided support to such families through the years I have continued to learn more and more. Do all of these families handle their situation the same? Do all of them journey the same path? No more than grief looks alike for everyone. Everyone deals with life, death and grief in their own way and in their own time. That is what makes this work so challenging. Every journey is unique.
Do I still believe in miracles? Yes, because as Paul stated earlier, “the miracle we experienced with Evan was the gift of time.” So, what can we do for these families?
Provide them with support. Let them know that they are not making this journey alone.
Provide them with options and guidance, if asked, in making decisions. Help them create a birthing plan. Assist them in understanding the options of care for their baby. Explain palliative care to them.
Create memories for them! Prior to birth the memories could include ultrasound pictures or tapes, journaling by either or both parents and talking and reading to their baby in utero. At the time of birth the memories could be footprints, handprints, molds of feet or hands, locks of hair, stuffed animals, ceremonies and many, many pictures and videos.
Follow-up care could include providing any health care assistance if they take their baby home including hospice referrals as needed, assisting with the funeral, staying in contact by phone or emails. Encouraging journaling and scrap booking can also be helpful in the healing process.
Follow through with them as long as necessary and, believe me, you will know when to let them fly on their own knowing that you will always be available down the road if they need you. And, most important of all, give them the “miracle of time”!