Support for Pregnancy and Birth after a Fatal Diagnosis

Describe "perinatal hospice and palliative care" and tell us about the resources you provide on your website.

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 op portunity 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 a nd 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?