Few events in a family's life bring more excitement and joy than the anticipation of a new baby. Suddenly, conversations are all about babies — baby names, nursery themes, baby showers, and the list goes on. However, for some parents, joy suddenly becomes heartache when the unexpected news comes that their much-loved unborn baby has a serious medical condition that will likely result in death. In just a moment, life is changed, and families find themselves facing decisions with no simple answers.
Because of the advances in prenatal testing, parents are finding out much earlier when there is a terminal diagnosis. Traditionally, the treatment or option most often advised is termination of the pregnancy and, sadly, 85 percent of parents choose this option. However, for many termination is not the desired option and so the need for supportive programs for this newly identified parent population has surfaced.
Perinatal hospice, a relatively new concept of care, is now being offered as a viable option for parents who choose to carry their baby to term. This care incorporates grief support and education from the time of diagnosis, throughout the pregnancy, and then through the bereavement period. Perinatal hospice involves a team approach of physicians, nurses, social workers, and bereavement counselors — everyone working together helping to ease the emotional suffering while preserving the dignity and integrity of the family as they make meaningful plans to honor the life of their baby. Such is the story of Levi.
I met Stephanie and Andy one fall afternoon. They had recently been referred to our perinatal hospice program after receiving the news that their son, Levi, had Trisomy 13. They had been advised to terminate the pregnancy. As Stephanie and Andy shared their story with me, I listened closely to the dreams they had for their son. We talked a lot about the grief and emotions that would accompany their family on this journey. Then we discussed Stephanie's practical needs. I presented her with a written guidebook for helping her to prepare — a guidebook filled with educational resources and tools that offered her options to create the experience she hoped for. Encouraging her and her family to be involved in decisions and planning made her feel she had some control in an out-of-control situation. It allowed her to parent.
One of the many roles of perinatal hospice is providing practical guidance. Probably the most important task we assist parents with is the creation of a birth plan. It is essential, and its purpose is two fold. First, it provides the details of the medical preferences the parents have for delivery, such as pain management and medical interventions desired for their baby. Second, it gives parents the opportunity to briefly share the story of their personal journey and what their precious baby means to them. When birth plans are in place, there are no questions as to the parents' wishes. Doctors and nurses say birth plans are a key element in seeing that the wishes of the parents are fulfilled.
Another focus for the parents is the collection of keepsakes. Collecting and finding ways to validate their baby's life is very important to all parents. Whether it is taking family pictures of mom's pregnant belly or journaling the details of the pregnancy, these mementos provide tangible evidence that affirms the lifetime and special significance of their baby and will be comforting to the family for years to come. Sometimes this involves referrals to the Now I Lay Me Down to Sleep Foundation, which offers the services of professional photographers across the country who volunteer their time and talent to help provide keepsake photos for families experiencing the death of a newborn. See their site at www.nowilaymedowntosleep.org.
Perinatal hospice involves much more than just birth plans and keepsakes. Other options offered might include:
Assisting with memorial service plans
Attending delivery as a patient advocate and emotional support for the family
Facilitating family referrals for spiritual support as requested
Providing follow-up bereavement support
Regardless of how much strength or courage a family has, the decision to carry a baby with a lethal diagnosis to term is not easy. The journey is difficult and painful. But parents who have done so have said they found peace and comfort in knowing they did everything possible to give their baby the best chance at life. Their initial feelings of despair were replaced with a newfound hope of sharing in their baby's life regardless of the time they had.
Perinatal hospice offers reassuring comfort to the family, but they are not the only ones who appreciate this approach to caring for families who find they have to make extraordinary health care choices. One neonatologist said to me: "Although I have worked in several prestigious perinatal centers, I was unfamiliar with the concept of perinatal hospice. My patients have expressed to me the great comfort they have experienced in having a team of health care professionals who understood the complexity of their baby's diagnosis and the lethal nature of her defects. They greatly appreciated the careful counsel they received in developing a health care plan that focused on comfort care. This was very reassuring to me as a clinician. And for the family it made a huge difference."
Stephanie and Andy prayed that Levi would be born alive, and their prayers were answered. They prayed for time to introduce him to his family and make memories, and their prayers were answered. Levi never left the loving arms of his family until he was handed into the arms of Jesus. I was there on that sweet, unforgettable day, but it is better told in the words of his mother.
By Stephanie B.
I'm not sure I can put into words the way my heart feels about my time with Levi. I do know that I am forever changed because of him and the effects he has had on my life. It's hard to understand how something can cause so much pain and yet be the most amazing experience in one's life. Even though my heart is broken and my arms are empty, I can honestly say that I would do it all over again. I miss him more than I desire to take my next breath of air and look forward to Heaven more every day.
Levi was loved and wanted from the moment he was conceived. I was so excited to find out that I was pregnant and couldn't wait to tell our other 3 children they would soon be having a brother or sister. We immediately began making plans, wondering if we would have a boy or girl, wondering whom he or she would look like, and looking forward to becoming a family of 6. Our whole lives were changing, and we couldn't be happier.
I saw the doctor monthly, and everything was going great. At my 17-week appointment, I was advised to do a blood test that would test for certain abnormalities. I had never done the test before, but figured it couldn't hurt. The rest of the appointment was uneventful; my measurements were right on, the heartbeat was strong, and I was scheduled for the big ultrasound when I would find out the gender.
About 3 weeks later at approximately 6:30 pm, my doctor called. I knew something was wrong as soon as I heard her voice. She explained that the blood tests were in and my levels were a little off. There was a small chance that my baby could have a neural tube defect, and she wanted me to go to the maternal fetal specialist for a level II ultrasound to rule that out. She scheduled my appointment for the following day, and tried to encourage me to stay strong. I prayed that God would protect my baby, and the thoughts that he or she may not be healthy were overwhelming. However, I knew that if God saw fit to bless me with a child with disabilities, then He would give me the means to take care of him or her. That night while I lay in bed with my hand on my stomach, I felt Levi move for the very first time. I thought my heart would explode and felt a sense of renewed hope knowing that God was in control.
We were scared, but knew that we would love our child regardless of any abnormalities or disabilities. The technician was very sweet but kept her attention on the ultrasound screen. She asked if we wanted to know the gender, but I could see already that we were having a boy. I was so happy — 2 boys and 2 girls — the perfect family. Upon completion, she left the room to allow the doctor to review the results. They both returned, and I will never forget what he said as he sat on the stool beside me with his hand on my stomach. He looked at me with big tears in his eyes and said, "I have some concerns about this baby." He spoke of each abnormality that he found and explained that in and of themselves, the abnormalities were correctable. However, the fact that there were so many was indicative of some sort of syndrome most likely on the chromosomal level. We would need an amniocentesis to confirm it, but he felt confident that it was a rare condition called Trisomy 13. He went on to say that Trisomy 13 was usually fatal, and under the circumstances, we could go ahead and be induced. At 20 weeks gestation, there was no chance of survival. We were being offered the option to terminate my pregnancy. Without even thinking, I told him that was not an option for us. Levi was our son, and we were already so in love with him. Only God would decide when it was his time to go. The amniocentesis confirmed the diagnosis of full Trisomy 13, which meant that Levi had an extra 13th chromosome in every cell of his body, and I had to figure out how to survive knowing that my baby's life on this earth would be short.
Our geneticist put us in contact with Tammy Tate from Carolina Perinatal Hospice, and I believe that she saved my life. She walked the walk with me and showed me ways to celebrate Levi's life no matter how short it would be.
We loved every minute we had with Levi. I loved feeling him move inside of me because it meant that he was alive. He responded to his daddy's voice, and would kick at his hand when he placed it on my stomach. We were honest with our children and told them that it looked like Levi would not get to live with us but would be going to Heaven. We prepared them the best we could and encouraged them to love him just the same. The doctors couldn't tell us how long Levi would live or if he would even make it through birth, but we were going to celebrate each moment we had him. The length of his life was not related to the amount of love we had for the little boy growing inside me.
The day he was born was the happiest and the saddest day of my life. The doctors stimulated him a little to facilitate easier breathing, wrapped him up, and placed him in my arms. I looked in his face and didn't think my heart could take it. He was beautiful, he was alive, and I was in love. My husband and I spent some time alone with him and then sent for our children. We wanted them to meet their brother while he was alive. Each one held him and loved him, and I couldn't have been happier. Other members of the family came in to visit with Levi not knowing how long he had.
After a few hours, we sent everyone out of the room and it was just my husband, Levi, and me. Things were changing, and I knew that he didn't have long. I laid him on my chest skin to skin. We covered him with his very own blanket and placed under his arm a small blue stuffed dog that his sister had picked out for him. We talked to him, smelled him, rubbed him, kissed him, and loved him. With his ear on my heart and his daddy's hand on his back, I told him that it was okay to go whenever he was ready. He had been so brave and strong. I prayed and asked God to come get him when it was time and to please not let him suffer. As he lay on my chest, his breathing slowed and eventually stopped. His passing was so peaceful, and I believe that Jesus walked into my room and personally escorted him to Heaven.
I have never felt so much love in all my life, nor have I felt so much pain after losing him. As much as I miss him, I would go through it all over again for just one more minute with him. All the pain and heartache was worth getting to have my son throughout my pregnancy and for the 4 1/2 short hours he was alive in my arms. It was so worth it!
I'm still trying to learn to live with the loss 18 months later. It is still hard, but knowing that Levi will never know sin or pain or heartache helps me deal with that loss. When it is my time to go, I believe that Levi will be there waiting to welcome me to Heaven ... and that gives me the strength to make it one more day.
Tammy Tate developed and implemented the first perinatal hospice program in South Carolina. Her insight into the difficulties of parents when faced with a lethal prenatal diagnosis is a result of many years as a high-risk BO nurse. She is the author of The Journey of a Lifetime: A Parent's Guide to Planning and Celebrating a Baby's Brief Life. She has been a guest on Focus on the Family's Weekend Magazine. Tammy is currently providing perinatal program consulting and development and can be reached at firstname.lastname@example.org.
Tammy Tate wrote The Journey of a Lifetime guide for parents who receive a devastating prenatal diagnosis and chose to continue their pregnancy. It is a compassionate and practical resource that provides clear and relevant information that focuses on the needs of both the parents and their baby, giving parents the freedom to make meaningful decisions that honor and validate the life of their precious baby. From creating birth plans to ideas for special keepsakes, this guide will be a valuable resource to help plan, celebrate and honor their baby's lifetime. For copies visit: www.shapingyourvision.com
Posted in: Counseling
, Tammy Tate