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]

Perinatal Hospice

There is a wonderful movement called perinatal hospice.  It's purpose is to support families continuing a pregnancy after adverse prenatal diagnosis.

"Perinatal hospice is not a place; it is a way of thinking about your pregnancy and your baby."

"It is a continuum of supportive care that honors your baby as well as your role as parents."

"It affirms life and regards dying as a normal process, intending neither to hasten nor postpone death." 

[Quotes from A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief,  Amy Kuebelbeck and Deborah L. Davis, Ph.D.]


We were fortunate to learn of this model of care shortly after Joan was diagnosed with Trisomy 18.  And we were even more blessed to find amazing, supportive individuals to take this journey with us.

To say that I am a huge advocate of this movement is an understatement.  I am proof of it's value.

I have been thinking a lot lately about how to raise awareness of the perinatal hospice concept.

Would it shock you to hear that most people -- including medical professionals who care for pregnant women, and probably even the same doctors that diagnose these fatal disorders -- have never heard of perinatal hospice?

It's time for that to change...

An Unbreakable Bond

When it comes to baby loss, I think people tend to underestimate the bond of parent and child.  Mother and baby.  Mother and daughter.

And how quickly that bond forms. 

I find myself often wondering what people think.  Of me.  Of Joan.  Of what we've been through.  Of what we are still going through.  And what will stay with us forever.

Embracing life in the midst of death.  The death of my first child.  My little girl. 
And grief.  Oh, the grief.  I had no idea what I was in for.  The intense grief of a parent who has lost a child is a unique beast.

Do people think that my grief is less because I had only 10 months with my daughter?  Only 40ish weeks with her in my belly and one day to say goodbye?  I imagine many people do think that.

I wonder if people think that the parent-child bond does not form until after birth? 
I can't speak for anyone else, but for me... nothing could be further from the truth.

Do they think that my grief is less because my daughter was "imperfect"?  Or because I had warning -- I knew that my pregnancy and her life would likely end exactly as it did.  Because it was "nature's way of taking care of things", as some people think. 

It really bothers me when doctors speak like that.  As if my daughter was just an error of nature.  They completely miss the human factor.  This is my child.  My daughter.  Part of me in every way.  I could never rationalize away my love for my child.

The range of human emotions are not changed or erased just because the test showed an extra chromosome.

Maybe some people can detach and view children in this way -- imperfect and expendable.  But for me that is impossible.  Unnatural.  

I find it so much easier -- and more rewarding -- to love.

There is no love like the unconditional, pure love of a parent for their child.

When does this loving bond form?

Is it when you hold your newborn in your arms for the first time?  Or see the first ultrasound images of her perfect button nose?  Is it when you feel the first kicks?  Or hear the sound of her strong, melodic heartbeat fill the exam room?  Is it when you see the positive result appear on the pregnancy test stick?

I imagine it is different for everyone.  I don't remember the exact moment it happened for me, but I'm pretty sure... it was instantaneous.

Waiting for Life. Anticipating Death.

I find comfort in other blogs about child loss (like this one that just launched -- Still Standing) since the grief is universal.  However, there is a glaring difference in our experience with our baby girl that is lacking from many resources.  We knew while I was pregnant with Joan that she was going to die.  Halfway through the pregnancy when we received the diagnosis of Trisomy 18, we knew she had limited time with us.

We began grieving immediately.  Grieving the loss of all of the dreams that go along with a healthy pregnancy.  Anticipatory grief.  That's what they call it.  While at the same time Joan was growing (slowly but surely), moving and kicking in my belly.

How do you embrace the new life growing inside of you, while waiting for death at the same time?  How do you become attached to this little person that is a part of you, knowing how unbearably painful it will be to say goodbye?
...How do you not?

We were going to stop at Babies R Us after Joan's 20 week ultrasound appointment to start a baby registry.  We never made it to the store.  We never set up a nursery.  We knew Joan would likely never make it home from the hospital.  And if it turned out that she did come home with us, any essentials we would need could easily be purchased at that time.  It struck me how unimportant, and unnecessary, a baby registry was and all of the material items that everyone spends lots of money on.  Funny how your perspective can change in an instant.

Knowing that Joan was going to die was a blessing and a curse all rolled into one.  There is a quote from Michael J. Fox that I love.  "It's the gift that keeps on taking."  He was talking about Parkinson's disease, but that is how I felt about Trisomy 18.  It was a gift that made us appreciate every day, every moment with Joan.  But it was taking away all of our dreams for a lifetime with our daughter.

I often think of the families that are completely blindsided by the sudden, unexpected death of their babies, especially through stillbirth.  It was a blessing that we knew what we were facing, so we could focus on embracing each moment with Joan.  We could plan for what she would need, rather than rush around wasting time on things that suddenly felt so insignificant -- baby registry, shower, nursery, the Consumer Reports ratings for car seats, strollers and cribs.

Instead we planned for Joan's birth and death all at the same time.  Meetings with the labor and delivery nurse, neonatologists, funeral director and priest.  I didn't know what condition I would be in after Joan's birth and we weren't sure how much time we would have with her, so I wanted to be as prepared as possible for whatever might happen.  There was so much about the situation that we had no control over.  It helped to plan for the things that I could.  If I couldn't mother Joan in the way I had hoped for, I could mother her in the way that she needed. 

I would honor her life in this world, and aid her peaceful passage to the next.

The curse of Trisomy 18 was knowing we would likely never celebrate many milestones with our daughter -- first steps, birthdays, holidays.  Feeling death approaching and wondering each day if it would be the last.  But trying to live each day to the fullest and find joy regardless.  That was the challenge.

To embrace life in the midst of pain, sadness and loss.  That is still the challenge as I navigate this minefield of grief, seven months since I last held my baby girl.

Statistics and Reality

I used to live in a world where seemingly everyone I knew had healthy babies.  I was completely oblivious to reality.  

Do you know that 1 in 4 women will experience the loss of a baby at some point in their lives?

But that would never happen to me. Until it did.

Suddenly my world is very different.  I have met so many people who have experienced miscarriage, stillbirth, and infant loss resulting from various causes.  No one talked about it before (other than the occasional miscarriage).  Now that I am in "the club" I am much more aware of how frequently it happens.  And it happens to healthy, low-risk women who do everything they are supposed to do to have healthy babies.

I found this site after we lost Joan.  It is eye opening.  Why is this still a taboo subject?

Since we lost our daughter, Joan, we have attended the local Share Pregnancy and Infant Loss Support Group meetings.  And each month it seems that there is a new couple joining us. The losses range from miscarriage to stillbirth resulting from various causes, and often no known cause at all.  We are not the only couple there that has experienced a stillbirth due to chromosomal issues.  And that is just our local area.

Chromosome disorders and other life-limiting prenatal diagnoses happen more often than people realize.

Just six months after we lost Joan we heard that another couple we know received the devastating diagnosis -- a chromosome disorder.  The documented statistical likelihood for these "less common" chromosome defects is 1 in thousands (not including the suspected large numbers that result in early miscarriage).  Surely this could not happen to anyone we know.  But it did.  

The reality is that there are many different disorders that can take the lives of our unborn and newborn babies.  And current prenatal tests are discovering more of them earlier in pregnancy.  Unfortunately, doctors do not have many answers.

We were fortunate to find amazing, supportive resources throughout our journey with Joan.  But it was not easy.  It took time, effort and persistence.  All while going through the most devastating emotional experience imaginable.

I can't stop wondering... What if other couples in our situation don't think to ask the questions we did?  Will they ever realize there is help out there? 

They need to hear that there are people that have survived this journey.  And been changed for the better.

Statistics only go so far... when you're living the reality.

Breaking the Silence

Six months ago today, our daughter Joan Louise was born with her mother’s dark curly hair and her father’s long legs, but without a heartbeat.  Halfway through the pregnancy we discovered through routine tests that Joan had a rare chromosome disorder called Trisomy 18.  We were devastated by the news and the reality that our daughter would most likely die before or shortly after birth.  But as parents, we felt that it was our purpose to support Joan for as long as she was fighting to be with us.  

Ours is a very different journey than most new parents. 

It is an isolating experience, since most people will never experience what we have.  It is something that most people don’t talk about or are not even aware of.  There are many blogs about infertility, miscarriage, stillbirth and infant loss.  But it is difficult to find any about continuing a pregnancy with a life-limiting prenatal diagnosis. 

I feel that it is time to break the silence. 

With the extensive technology and prenatal tests that exist today, it is increasingly common to diagnose fetal disorders early in pregnancy.  Unfortunately, there are many conditions that the advanced medical community still cannot fix.  Commonly, the solution offered is to terminate pregnancies with an adverse fetal diagnosis. 

In sharing our story I hope to bring awareness that there are other options, and there is support out there.

I hope to be a voice for others who experience similar circumstances, and to let them know they are not alone.

This is one of the many gifts that our daughter has brought me.  She has given me the courage to speak out and share our story in the hope of helping others.  Joan continues to change my life every day. 

Though her life was brief, little Joan touched many. 

Amazing the impact one small life can have…