We have been given the opportunity to interview Amy Kuebelbeck, journalist, author, and founder of PerinatalHospice.org, a resource website for parents who make the decision to continue their pregnancy after receiving a diagnosis that their child will die shortly after birth.
Describe “perinatal hospice and palliative care” and tell us about the resources you provide on your website.
Most pregnancies progress beautifully and end joyfully with the birth of a healthy baby. Sadly, some pregnancies end unexpectedly in miscarriage, stillbirth, or infant death. And in a heartbreaking twist created by prenatal testing, some parents are receiving devastating news before birth that their unborn baby has a condition so serious that the baby is expected to die.
Many families in this situation are choosing to continue their pregnancies and allow their baby’s life to unfold naturally, embracing the time their baby will be able to have, no matter how brief. In response to these families’ needs, the concept of perinatal hospice and palliative care was pioneered in the U.S. and is now spreading around the world. Caregivers are incorporating wisdom from adult hospice and palliative care into the care of these families, treating all involved with respect and compassion and love. Perinatal hospice is not a place. It’s a model of care that can easily be incorporated into ordinary pregnancy and birth care just about anywhere.
This support begins at the time of diagnosis. It can include birth preparation and preliminary medical decision-making before the baby is born; plans for making memories with the baby such as photography (for example, see the beautiful work of Now I Lay Me Down to Sleep, an international network of professional photographers); emotional support; and more-traditional hospice and palliative care at home after birth if the baby lives longer than a few minutes or hours. (Lamaze healthy birth practices can help parents prepare for a labor and delivery that is as natural and peaceful as possible.) Palliative care can also include medical treatments intended to improve the baby’s life. This approach walks with these families on their journey through pregnancy, birth, and death, honoring the baby as well as the baby’s family.
I know it sounds counterintuitive, but even though these parents know that their pregnancy and birth will result in a baby who is not expected to have a long life, this path can bring surprising beauty and joy.
I started the PerinatalHospice.org website in 2006 because I wanted to provide a comprehensive site for parents to find support and for caregivers to find information about how to provide this care. The website includes many online support resources for parents; professional resources such as medical journal articles for caregivers; and an international list of hospitals, clinics, hospices, and others that provide perinatal hospice and palliative care support.
At the time I started the website, I had been collecting notes literally on scraps of paper about the few perinatal hospice programs in existence. It seemed to me that someone ought to keep track of the programs and make a list available online, so I decided to go ahead and do it myself. It’s been inspiring to see the growth in programs across the U.S. and around the world. As of this writing, the number of perinatal hospice and palliative care programs listed on my website is 193, and the number is growing all the time. (Recent additions include hospitals in California, Ireland, and Chile, as well as an independent program in Hawaii.) Ultimately, my goal is that the list will become unnecessary — that it will be as redundant as keeping a list of hospitals that provide emergency care or obstetricians who can perform C-sections. I hope perinatal hospice and palliative care will become a standard model of care available to any pregnant woman whose baby is diagnosed prenatally with a life-limiting condition.
How/why did you get involved in this line of work?
I needed this kind of support back in 1999, and there was nothing like it. My husband and I had learned through prenatal testing that our son, Gabriel, had an incurable heart defect. I searched for websites, books — anything — for reassurance that someone else had gone through this experience of continuing a pregnancy and simultaneously preparing for birth and death. There was virtually nothing. The idea of perinatal hospice had not yet spread. Fortunately, we had an empathetic nurse who affirmed for us that we still had a profound opportunity to parent our baby. We created a sort of perinatal hospice experience for ourselves, even though we didn’t have those words for it at the time. I eventually wrote a memoir, Waiting with Gabriel, which was the kind of story I had been searching for while I was pregnant. A few years later, I put my journalistic hat back on and collected stories from more than 100 parents for A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief. It’s like “What to Expect” when this isn’t what you were expecting at all. I invited developmental psychologist Deborah L. Davis Ph.D., who is now my friend, to co-author the second book with me because I had been helped greatly by her books Empty Cradle, Broken Heart: Surviving the Death of Your Baby and Loving and Letting Go. When Debbie and I were writing A Gift of Time, sometimes people would assume that the subject was depressing. It wasn’t, because every story in it is a love story. Parents’ descriptions of saying hello to their babies through tears of joy still give me goosebumps. My hope is that these books and my website will help at least one other parent feel more empowered and less alone.
What do you find that parents need most after they’ve received a fatal diagnosis for their child?
Judging from my own experience and what I’ve heard from hundreds of other families, parents first of all want to be acknowledged as parents and want assurance that their baby’s life is valued by others, even though that life may be very brief or “imperfect.” They need to hear that they will not be abandoned and instead will receive excellent care from their caregivers during the remainder of the pregnancy, during birth, and beyond. They need reassurance that life-limiting conditions generally do not cause the baby to suffer, and if pain is a possibility, it can be treated aggressively and effectively. They need to know that life-limiting conditions in the baby generally do not pose any greater physical risk to the mom than the normal risks of pregnancy. (For medical references, see perinatalhospice.org/FAQs.) They need to hear that others who have traveled this path have found that it’s not just a journey of grief but also a journey of love. Continuing the pregnancy can be beautiful, profoundly meaningful, and healing.
When parents receive a fatal diagnosis, what the first thing they should do/first step they should take?
The first thing I would gently encourage parents to do is to take a deep breath and not make any decisions immediately. Typically, the baby is snug and safe right where he/she is and is not in any distress. It’s not an emergency. Take the time to research your options and imagine what each path might look like, both for you and for the baby. Parents who are considering terminating the pregnancy usually still have time to make that choice. (Most states allow abortion for any reason through about 24 weeks of pregnancy and also allow exceptions after that, and nine states and the District of Columbia have no time limit at all.) A diagnosis like this leaves parents reeling. Many parents have said that they benefited from taking time to process their initial shock and grief before being able to make a clear decision about how to proceed.
In what ways can extended family members help?
This is a difficult experience for extended family too. They may be mourning for an already-loved grandchild, niece, or nephew. They may feel helpless watching the parents grieve and wish that something could make the situation go away. The sad truth is that nothing can erase the fact that this baby is very sick, and there is no shortcut through grief. What often helps both the parents and extended family is to offer support just like you would to anyone experiencing a terminal illness or loss. That could mean practical help with food, babysitting, and household tasks, as well as simply being present and listening if the parents want to talk. (Not just the mom; ask the dad how he’s doing too!) And there are ways to show your support for this unique situation. If the baby has been given a name, use it. This honors the baby and honors the parents’ gift of the name, one of the few and precious gifts they will be able to give to this little one. If invited to be present at the hospital to welcome the baby, or if there’s a funeral or memorial service, go — even if you’re afraid or think you’ll be uncomfortable. Google for lists of things not to say to parents whose baby has died. (“At least you didn’t really know the baby” is one example that many parents find deeply hurtful.) But do say something, even a heartfelt “I’m so sorry” or a simple “I don’t know what to say.” For more ideas, Share Pregnancy & Infant Loss Support has a helpful brochure, “Ways to Support a Parent Whose Baby Has Died.”
How Can I help?
There are lots of ways to help. If you know someone who is expecting a baby and needs this support or who is currently researching options for her pregnancy, send her to PerinatalHospice.org to find a program closest to where she lives. (Even if there’s no program nearby, she and her caregivers can work together to create this kind of care for her and her baby.) If you would like to make sure your own caregivers know about this concept, please tell them about the website and about the professional training and resources available. You can follow perinatal hospice news on Facebook. And if you’d like more people to know about this beautiful and compassionate model of care, please share information about it with your friends and on social media. Maybe someone out there needs this help right now and will find it because of you.
Amy Kuebelbeck is a freelance journalist and former reporter and editor for The Associated Press and other news organizations. She is author of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief (Johns Hopkins University Press, 2011), along with Deborah L. Davis Ph.D. Kuebelbeck described her own experience of continuing a pregnancy with a life-limiting prenatal diagnosis in her memoir, Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life (Loyola Press, 2003), which is used by many hospitals and clinics as a resource for patients. She edits the website PerinatalHospice.org and its companion Facebook page and is a frequent speaker at medical conferences across the U.S. and Canada. She moderates an e-mail group for caregivers interested in perinatal hospice, a group begun in 2006 that now has grown to more than 300 members. She also has been quoted by media including The New York Times and MSNBC.com in stories about perinatal hospice and related issues.