On Our Own

It became clear very soon after Joan's Trisomy 18 diagnosis that we were driving the bus, so to speak.

Terrifying thought.

As first time parents -- facing a challenge we never expected and knew little about -- we had no idea what we were doing.

Two things were clear. Our daughter was most likely going to die either before birth or shortly after.  And we were going to love and support her for her entire life.  In other words, we were not going to end my pregnancy.

Other than those two certainties, the rest was a terrifying unknown.  What do we do now?  How do we prepare? 

We got conflicting guidance from various medical professionals.  And everyone we spoke to seemed to have a different opinion on what was best for us and Joan.  And then there were the doctors -- esteemed specialists even -- that said to us, we'll do whatever you want.  Really.

Doctors are not trained for this type of scenario.  They want to fix everything.  As Dr. Byron Calhoun, a pioneer in the perinatal hospice field, explains these terminal fetal diagnoses require high touch, not high tech patient care.

So we were, in many ways, on our own.

On our own to figure out how to do this scary thing called continuing the pregnancy.  With five more months stretching ahead of us.  How on earth would we get through each day?

With each appointment, we were clearly educating the medical professionals in many ways.  As if they were looking to us for guidance.  Most people terminate, they kept saying.

Don't get me wrong, many of them offered useful council, comfort, and advice for steps we could take. We are grateful to many people for their support.  But sometimes I wondered if their help was mainly accidental -- or possibly intuitive for the compassionate few -- rather than based on experience or training.

Each time, I kept waiting for someone to step up and say this is how you continue the pregnancy and here is a road map to get you through the next few months.  These were supposed to be the experts after all.  Why did we have to figure it out as we went along?  What if we made some huge mistakes along the way?  It felt like no one was guiding us.  We were leading.  Blind.

We were the experts.  And what we found was that there is a road map to guide you through the rest of the pregnancy and beyond.  It is called perinatal hospice. 

Unfortunately, we had to blaze the path in many ways.  All while experiencing devastating grief.  It is a very personal journey.  Unless you are a parent who has lived through this experience, maybe you can't fully understand it.

But there is no reason why medical professionals cannot offer perinatal hospice care.  If they can diagnosis fatal conditions before birth, they should offer clear options and support.  It is time for health care to catch up to diagnostics.

No one should have to go through this devastating experience feeling scared and isolated, without experienced guidance.