The Journey of a Lifetime . . .
On a rainy July afternoon, a young mother called me. The trembling voice on the phone asked, "Are you the hospice nurse?" Before I could answer she said, "My baby is going to die and I really need your help."
Julie was approximately 20 weeks pregnant when her unborn baby girl was diagnosed with Trisomy 18, a lethal chromosome abnormality. At the time of diagnosis, Julie was given the option to terminate her pregnancy, but she and the baby's father, Joey, chose instead to proceed with her pregnancy. Her desire was to honor and cherish whatever time she had with her daughter. Only now, she found herself alone with little support or direction.
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. But for some parents, joy can suddenly be replaced with heartache and despair when the unexpected news comes that their much loved unborn baby has a serious medical condition that will likely result in death. In a moment, lives are changed, dreams are shattered, and the family is caught up in a whirlwind of uncertainty and grief; parents find themselves facing difficult 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. But for many, termination is not the desired option and thus, the need of supportive programs for this newly identified parent population has surfaced.
Perinatal hospice, a relatively new concept of care, is 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.
As Julie sat in my office and shared her story with me, I listened closely to her dreams for her daughter. We talked a lot about the grief and emotions that would accompany her on this journey, not just for her, but her family as well, and then we discussed her practical needs. I presented Julie with a written guidebook for helping her to make preparations - 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, and 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.
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 to term with a lethal diagnosis 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 new found hope of sharing in their baby's life regardless of the time they had.
A Gift of Time
As for Julie and Joey, their precious baby daughter Rabecca was born on October 1, 2007. They prayed that Rabecca would be born alive and their prayers were answered. They prayed for more time to spend with her and their prayers were answered again! The sixty-seven days Rabecca lived were a gift, and they lived every one of those days building memories of her lifetime. Julie shared this about her experience with perinatal hospice.
"Before I walked into that office I had no idea how badly I needed help. I don't know how I would have made it through alone. I wanted to give my little girl the best chance possible at being born alive. I am so grateful that I had someone there to support the decision that I had made to carry her to term. Each and every detail and wish that I had for the birth of my daughter was paid attention to and respected and 67 days later when my baby got her angel wings, my support was there in my room holding my hand. How do you do that alone? You don't, not when there are programs available to assist you like perinatal hospice. I am so thankful for everything that you did for me and my family. You helped make this transition so gentle and loving. I could not have gone through this without you!"
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 themselves having to make extraordinary health care choices, as one neonatologist said to me:
"Although I have worked in several prestigious perinatal centers (Emory and Duke University, 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."
When little Rabecca passed away after over two months of being loved and tenderly cared for by her parents, her doctor had this to say, "Rabecca's life has really been a miracle and she has taught all of us that medical knowledge is not perfect and that we should proceed with great caution when we try to predict the outcome of neonates with severe defects."
The journey of love and loss continues toward healing one day at a time for Julie and Joey. But they have no regrets and have said to me many times; "Rabecca taught us a lot about life and to cherish every moment and every breath God gives us. Without ever uttering a word, her life changed ours."
Tammy Tate is the CEO and co-founder of Carolina Perinatal Support Network in Greenville, SC. Her background as a registered nurse with over 25 years experience in high risk obstetrics and perinatal bereavement has given her insight into the difficulties of parents who are faced with an adverse prenatal diagnosis. She is the author of, The Journey of a Lifetime: A Parent's Guide to Planning and Celebrating a Baby's Brief Life. Full of practical ideas, helpful tools and templates, this guide will empower parents to create a memorable and loving experience for this unforgettable journey. It is also a welcome resource for physicians who have limited or no perinatal hospice resources available and to help perinatal hospice programs to enhance the care of their families.
The Journey of a Lifetime guide was written for parents who have received 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.
Order your copy of Journey of a Lifetime.
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