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.