Guest post from a Perinatal Hospice Nurse
About a year ago, a well known Protestant pastor had a question posed to him on a radio show. A young mother called in with a heartbreaking problem – her twins were conjoined and she wanted to know if she could end the pregnancy because even if she continued, the babies would likely both die. She wanted to know if abortion (essentially prenatal euthanasia) could be justified for Christians based on life expectancy and possible suffering. The Pastor told her to go ahead and consider the abortion acceptable because the babies’ life expectancy was bleak.
This is my response.
I am a nurse with a specialty in Perinatal Bereavement and Perinatal Hospice; I care for women experiencing pregnancy loss, infant death, and pregnancies where the baby’s life is expected to be brief. To me, there were gaps in this discussion and I would like to fill-in a few of them.
There was a time not long ago when expectant parents who were given grave prenatal diagnosis had to abort or struggle with their challenge alone, completely unsupported by the medical community. Nursing textbooks from the 50’s told nurses to not let parents even see the “monstrosities”. In the last decade, a new model of care has evolved in Medicine & Nursing – that of Perinatal Hospice and Palliative Care. There are professionals prepared to interact with parents from the moment that an adverse diagnosis is made. This model of care is not available everywhere but there are websites and organizations who do long-distance mentoring to people who don’t have a program available locally.
To me, the most alarming thing spoken between the caller and the Pastor was the statement that abortion was acceptable because the baby’s “life expectancy is bleak”. If we believe that God is sovereign in all things, why do we act as if He is absent in this? Rationalizing that abortion is acceptable in these situations reveals our fear of death and the unknown, and doesn’t give God the chance to shine His light into the darkness of the situation. I’ve experience that God does indeed do this.
When I worked for a hospice that cared for adults, I went into that job thinking that the biggest change I would see was the transition of the patient from life to death. After watching the dynamics of a few families over the course of the illness and death, I discovered that the biggest change was in the caregivers. The family members tasked with the minute to minute care of the dying person often went into it saying things like “I can’t give them medicine, I can’t do that dressing change, I can’t watch them die, I can’t talk to them about thier death, I can’t deal with them not eating…” But, little by little they learn to do things they never thought they could do.
Of course on the day of the death, the grief of the fresh loss is the most compelling concern, but right behind that I saw the caregivers become aware of an amazing sense of accomplishment. They did something bigger than they ever thought that they could do; and I believe this accomplishment goes with them into all the future things they do in life. This is one of the reasons I do not believe in euthanasia. What if the response to, “I can’t___” is “You are right, you can’t, let’s off grandma.” We would cheat that person out of probably the most influential event of their lives and leave them fully convinced that they “can’t”.
I have mentored many parents through a pregnancy where we know the baby will not survive long. This is a difficult yet transformative experience. I have seen powerful, loving, meaningful, sacred parenting done in a few minutes of life. The fact that a life will be very short does not mean it is less important, I argue that each of those minutes becomes then more precious.
Part of what I do is to pull off the dark cloak of fear and unknown and ask parents what most frightens them about the pregnancy and delivery.
“I am afraid of who I will become.” You will become an amazing person.
“Will the baby suffer?” The disease processes that end life at birth are most often not painful but in the event that pain is a possibility, there is medication.
“Who will be there with me?” I will, and whomever else you want.
“How will we know what the baby needs?” The baby will tell us, we just need to learn what they are teaching.
“How will I tell my other children?” Tell them the whole truth and then let them nurture you, they are wiser than you think they are.
“My friends and family are so freaked out they wont even speak of it.” Give them time, God will put other people into your path for now.
This video is made by the author. Her contact information is at the end, and she welcomes questions from anyone interested in more information. It is her sincere prayer that more people realize the need for this kind of care and join her to make it a reality. Why isn’t this obvious?
13 thoughts on “Changing “I Can’t” Into Sacred Parenting”
I said something similar in my RCIA group to catechumens wondering this or that about the church’s teaching on abortion/euthanasia:
that God is a God of possibility. That we deprive ourselves of something God is trying to achieve when we close doors on a human life.
Closing doors and saying “I can’t” send the same message to God– you are not wanted here. Whereas the Church continually calls us to open doors to possibility, the Culture of Death bids us shut, shut out, shut up, shut down.
SWP,
Yes, you are right. I think one problem is when people will only accept Gods intervention in one form – that of total and perfect healing. They may not get a loved one perfectly healed, but there is still Grace and love and life to be lived.
Often people want to assume that any bad diagnosis is a mistaken diagnosis. It has been about 16 years since I saw a true mistaken diagnosis, but even if the baby is as sick as we fear, there is only one way to let them tell their story…and that is to give them the time and space and opportunity to let them live out thier days (or hours or minutes or seconds).
Wow… the tears are flowing. What a beautiful video. This is the sweetness and precious gift that too many moms and dads are forfeiting out of fear or manipulative pressure or ignorance. We have to help them be brave and choose love and life. There’s no regret in choosing love.
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This is so beautiful. Thank you for your work, and for sharing with us.
This is a wonderful article and testamony to Pope John Paul II’s Gospel of Life. All life is sacred, no matter how short it may be. In my area there is a clinic associated with the local Catholic Hospital that was set up just for this reason, difficult pregancies and the possibility of the child passing away shortly after birth. The men and women who work in this field are very special. The video was just wonderful though it did cause me to bring out the tissues. Keep up the wonderful work you are doing, you will be greatly rewarded.
Richard,
You are blessed that there is a program near you to serve those local to you. When I started my program there were only 40 in the US but now there are about 120. Some are secular, some religiously affiliated, some professional and some volunteer. The link at the end of my video is perinatalhospice.org which has the most exhaustive list that I know of.
I was misleading, that clinic near me handles premies, but there are 3 locations within the state (Ind) which have the care you offer.
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I thought you guys might want to hear an update on the effect of this post. I made this video this past 4th of July..I had thought the idea up but that was the day I had time to actually make it. Since July there had been about 6000 hits in about 80 countries, but the views had slowed to a trickle. Since being posted here, it has been viewed almost 900 times with almost as many views in Ireland as the US. It was reposted on about 4 blogs.
In a world where videos of dogs farting can have a million views, 900 might seem small, but there are likely going to be people who see it who are in a position to use the model of care themselves or they may be in a position to advance it in their city or country. There are like 20 countries with one or 2 views…we just have to trust that it is the RIGHT one or two people . God will work with that, I just know it.
I got a call from the mom in the video last week, her sister had a baby in a hospital in Kentucky and in the course of chatting with the nurses told them about Erin. The nurses told her that they saw a video about a similar case…turns out it wasnt “similar”, it was Erin : ) Please know that this family has healed wonderfully and went on to have a baby boy after Erin who joined his brothers. This boy is a little bit older than my family’s surprise grandson…she gives me hand me downs and when I see my grandson in his shoes, I smile.
In the video there is a single photo of making a mold of her hand in a seashell using modeling compound. The grandpa in the video has made it his task to collect enough seashells to make as many of those as we ever wanted to…we have made “seashell kits” and given them to hospitals all around my region.
If you ever get into conversation about this out in the world and want to refer people to it, you can suggest they google “perinatal hospice” or go to perinatalhospice,org and they will find it. Even if you ever only mention it once, it will likely be to just the right person. Thanks for your support.
OK, I cracked up when I started the second paragraph.
Thanks for the follow up. I would just like to add- dog farts are forgettable; your video is not. Seeing it once can change someone’s perspective for life.
Beautiful video…it reminds me of my son, Simon’s birth four years ago. We don’t have a perintal hospice center, but my experience was very similar to the one in the video. My doctor and I made plans during the pregnancy of how everything would go, the nurses were great, photographers came in, my priest baptized Simon, family was there, all the momentos were created—it was a beautiful experience. My hope is that all parents have this opportunity if they need it. What scares me, though, is if “Obamacare” gets in. With as anti-life as he is, will perinatal hospice be “allowed”?
Jenny, God bless you and your dear Simon and those who cared for you. You prove the point that Perinatal Hospice doesn’t even require a program, it is more of a philosophy.
From my vantage point, Obamacare is here and Perinatal Hospice and Palliative Care is here and is growing and will continue to. Providing this care really isn’t expensive, so even if they tried to limit funds, they cant stop or disallow it.
Have you had chances to mentor other moms since? Mary Kellett at Prenatal PArtners for Life coordinates new moms and experienced ones, she is a lovely person.