Perinatal Hospice

I first read about “Perinatal Hospice” in a newspaper article in about 2003; it was a new model of care that had been developed for families who were faced with life threatening diagnosis for their unborn babies and only a small handful of programs existed. It was first proposed by a (then) Army OB Physician who had to give his patients devastating news about their baby’s health, but if the mom/parents chose not to abort, there wasn’t really any support offered. A few really brave trailblazing parents set out alone on these paths, and we have a lot to thank them for.

My experience of Neonatal ICU, Hospice, and Pastoral Care prepared me well for the task. We had all the needed services, but weren’t offering them to people until the day of delivery. Why not give people some lead time to consider and plan for their births?

I pitched the idea to my director in late 2004. We had our first patient in Dec 2005. When our program was added to the list of programs on perinatalhospice.org, it was only the 40th program in the world. Each case taught me so much and the quality of care evolved little by little.

In 2008, I was contacted by a woman who knew very early what her situation was and she was a planner. She and I had months to consider and plan her daughter’s birth. Part of the plan was to have a professional photographer document the baby’s life. The pictures were powerful and precious, and the family treasured them. I showed the photos to Nursing Students when they rotated through our unit, but I added a lot of verbal explanation. Then I wondered if I could ever create an educational video using text to explain the photos to help doctors and nurses see what that model of care might look like. After getting permission from the parents and photographer, I sat down on the 4th of July (I wasn’t invited to any parties) and created this video in my kitchen. After A few tweaks and edits, I launched video on YouTube in July 2011.

I hoped that “a lot” of people would see it, but I’m not sure what I defined as “a lot” back then.

One might think that the first language I would choose to translate the video into would be Spanish. However, I was first contacted by a Hospital in Poland who worked with me to create the Polish version – then there were Czech, Japanese, Italian, Spanish and French versions. When I first learned that nurses were coming here from Japan to learn about the care, I cried with gratitude. It was shown at an International Japanese Midwifery conference in Tokyo, a gathering of 15,000 people in Ireland, and just last week to 225 doctors and nurses in Portugal. The 7 different versions have been seen over 70,000 times in 150 countries.

You would think that the video and program would have been criticized a great deal by abortion advocates. However, until recently, I only received criticism from prolifers who had developed the conspiracy theory that Perinatal Hospice was a stealth version of euthanasia (which it is not).

Yesterday, a link was posted on an article in “The Irish Times” (where it was wrongly and oddly credited to “The American Perinatal Hospice Foundation” that doesn’t exist) and for the first time I saw it debated among abortion advocates who seemed to fear that people would be forced into using the program.

Which leads me to my point…

I think that it is a good thing for people to know that this care is (or should be) available, because families and their babies who are sick and will likely die at birth need good, loving, competent, compassionate care. It’s really that simple.

Those among us who are already disinclined to use abortion as a “solution” to illness in a preborn baby don’t need any convincing. However, if we use a lot of polarizing, argumentative language around this topic, and advertise it as “what prolifers do”, we seriously risk alienating the people who come at this from a pre-existing place of uncertainty or aversion to the idea of maintaining a pregnancy when a baby is sick – and those are the very people who need a gentle, respectful introduction to the topic.

For the most part, I really don’t spend any of my time arguing about abortion and hospice care – I simply offer good care, because it’s good and it speaks for itself. When the topic of deciding comes up, what I normally say is “I’m an advocate for letting the babies tell their story regardless if their story is long or short.” If you choose to share the video on any social media, I encourage you to let the message speak for itself and not do any grandstanding about the alternative.

I feel very thankful that I had this opportunity to share this idea with the world, an idea where love abounds and kindness is central, and people are cared for in a way that allows their torn and sad selves to heal. I see now that God spent years preparing me with a strange and varied set of skills and experiences in order to be able to put all the pieces together in the right place and at the right time.

I almost never cry in the middle of cases. Yet, when I think of babies that are cared for well and parents given safe places to parent their sweet babies, I cry at the thought that for some of the cases, God allowed me have a small part in their journey.

[video_lightbox_youtube video_id=”tY7mq1g9pGk” width=”640″ height=”480″ auto_thumb=”1″]

Note: Respectfully, please refrain from using this video to pose arguments on the program or its mission as it relates to your position on Sanctity of Life issues. Thank you.