Allowing Parents to be Parents

As you can probably tell by the theme of my recent posts, I am enamored with the perinatal hospice concept. 

While I was pregnant with Joan, we were thankful to learn of this model of care and to practice it in our lives.  But I didn't think much about where it came from or why more people don't know about it.  We were just doing what felt natural to us as parents, and oh great, there happen to be resources we can use for support.

Somewhere along the line, it became obvious that this is not an intuitive and natural concept for others. 

By and large, people we encountered were respectful and supportive of us and our choice.  Though some still seemed to dismiss us or hurry us out of their office with an unspoken air of, there's nothing more we can do for you...  go home and wait for your baby to die. 

While this was frustrating (to say the least), we didn't have time or energy to deal with the disregard of others.  We knew what we wanted as parents and we focused on that.  We found people who were supportive.  And got what we needed out of those who weren't -- respect for our wishes.

I have a different perspective and appreciation for perinatal hospice now that I'm not just in survival mode.

Why isn't this model of care more mainstream?
Why isn't this option offered to all parents facing a terminal prenatal diagnosis.

In my quest for answers -- ultimately an attempt to raise awareness and help others -- a particular theme keeps coming up.

It struck me that this may be the missing link.  What was so intuitive and obvious to us as parents, remains a mystery to many...

Continuing the pregnancy is not about passively waiting for death. It is about actively embracing the brief, shining moment of this little life. 

[Source: Perinatal Hospice.org - Why would anyone continue a pregnancy like this? ]

I know that some people assume that continuing a pregnancy with a baby who will die is all for nothing.  But it isn’t all for nothing.  Parents can wait with their baby, protect their baby, and love their baby for as long as that baby is able to live.  They can give that baby a peaceful life – and a peaceful goodbye.  That’s not nothing.  That is a gift. 

- Amy Kuebelbeck, author of Waiting with Gabriel - A Story of Cherishing a Baby's Brief Life


You also may want to watch this enlightening testimony by Dr. Byron Calhoun before Congress.


Maybe the disconnect between those who recommend or choose pregnancy termination when faced with a poor prenatal diagnosis and those like us who choose life, is exactly this. 

They don't realize that it is not just passively waiting for death.
It is not pointlessly dragging out the inevitable. 
It is not just minimal or routine prenatal care. 

It is not just standard bereavement care. 

This is a unique situation that requires unique, multidisciplinary care.

It is allowing parents to be parents.  And providing the support they need throughout the journey, whatever it may bring.

The Need for Perinatal Hospice Support

I just found this article and couldn't resist sharing it.  Raising awareness.

Along the lines of no one seems to understand what it's like in our shoes, continuing a pregnancy with a poor prenatal diagnosis -- maybe this will help.

While this happens to be a religious source, make no mistake -- this is a universal issue.

There are several parts that I found to be so true to the experience.

In case you don't read the whole article, let me summarize the highlights...

“I wanted this baby to have an opportunity at life, and I wanted my boys to have an opportunity to love her,” Mrs. Rose said. She added, “I didn’t want the boys to think, ‘She’s not perfect so we’re not going to keep her.’ What kind of a message is that?”

Indeed.  What kind of message is that?

“A mother, by nature…is the one who loves her baby,” and so does the father, Dr. Parravicini said. “It is so unnatural to do anything that would harm the baby. The vast majority of the time, they just need support.”

She added, “Our call as physicians is not to eliminate the patient, but to provide whatever care the patient requires.” That can mean a cure, or treatment that will prolong life, or supportive care for however long the patient lives, whether “for 70 years or seven minutes,” she said.

...while parents in such a situation will be told exactly how to arrange for an abortion, there is “no road map” for those who choose to continue the pregnancy.

So true.  Continuing the pregnancy feels like the most natural thing to do as a parent.  But is also a scary and vast unknown when you are told that most people terminate.  Parents are not given a What to Expect book in this case.

She scorns the notion that a baby who will die soon might as well be aborted. “What if one of my daughters came down with leukemia when she was 7 years old? I wouldn’t shoot her in the backyard to get it over with,” she said.

Exactly.


[Excerpts from Network Being Formed to Help Parents Whose Unborn Babies are Ill , by Claudia McDonnell, www.cny.org]