Pregnancy and Infant Loss Awareness Day

In honor of Pregnancy and Infant Loss Awareness Day, October 15th, and all of the mothers who understand this all too well.


A Birth Healing Blessing

Blessed sister, beautiful one
with broken wings.
Your journey is a difficult one
that no mother should have to endure.
Your path is steep, rocky and slippery
and your tender heart is in need of gentle healing.

Breathe deeply and know that you are loved.
You are not alone,
though at times, you will feel like a
desolate island of grief
untouchable
distant.
Close your eyes.
Seek the wisdom of women who have walked this well-worn path before you,
before,
and before,
and before you yourself were born.
These beautiful ones
with eyes like yours
have shared your pain, and
weathered the storms of loss.

You are not alone (breathe in)
You will go on (breathe out)
Your wings will mend (breathe in)You are loved (breathe out)


~ Mary Burgess
Author, Mending Invisible Wings, a healing journal for mothers following the loss of their baby through late-term miscarriage, stillbirth, or neonatal death.

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.

I knew my baby would die before she was born

This is how another mother, and blogger, put it:

"I fit into a unique niche that is becoming more prevalent; I knew my baby would die before she was born.  When I was twenty-three weeks pregnant, she was diagnosed with Trisomy 13 and we were told she may be stillborn or live minutes, hours, ..." 

This sounds all too familiar to me.

You can read this other mother's story at glow in the woods.  I hope you do.  It is honest and real.  I can relate to it on many levels.

We are becoming more prevalent -- parents who know, long before they are born, that our babies will not survive.  Largely because of advances in prenatal testing and mainstream access to these tests.

While it is a sad and devastating reality, I am encouraged by others speaking out and by the awareness I hope it brings.  So that compassionate care and support to those like us will improve. 

There is certainly room for improvement.  We can not pretend that situations like this don't happen.  Or that they only happen to other people.

We can not assume that the quick fix is the only option.  Or that it is the right option for every parent.

It is not comforting to watch others look at you with I-wish-I-knew-how-to-help-you expressions on their faces.

I am striving to educate and raise awareness for this increasingly prevalent group of parents like us that deserve understanding, compassionate care and support.

Because of You

What is the impact of one brief life?
It might take me forever to try to explain it.

One of the countless gifts I received from my daughter are the amazing people I've met and now call friends, because of Joan. 
One of those wonderful, dear friends sent me this poem today.
So very fitting.

Because of You

 

Because of you I appreciate the sunset more than before.

Because of you I stop to look up at the moon and wish upon a star.

Because of you I look forward to hearing the birds sing in the morning, and thank God for their beautiful songs.

Because of you I am more understanding of others and accept people for who they are.

Because of you material things do not matter.

Because of you the touch of someone you love is more precious than any gift you can receive.

Because of you I have a broken heart but I thank God for sending you to me.

For there is no stronger love than I hold for you.

Until we meet again...

A Choice

Doctors and society seem to think that we have a choice, as a parent carrying a child with a "fetal anomaly", as they call it -- a disorder that statistically indicates the baby is not likely to survive. 

The choices presented are:
1) abort the baby, or
2) continue the pregnancy.

(#2 should really be more specific -- perinatal hospice care -- in my opinion, but you can read my other posts for more on that.
Also, I recently learned that some parents don't even realize that there is an option #2, but that is for another day...)

What no one seems to recognize, is that it really isn't a choice in the way they expect. 

With diagnosis of a "fetal anomaly", we are told that it is statistically unlikely that our baby will survive.  Our baby will die.  And we will grieve.  We will be devastated by the loss of our very loved and very wanted child.  We have no choice in that.  And in reality, the grieving starts immediately at the diagnosis as we mourn the loss of the healthy child we expected. 

The choice then is on the timing and method of our baby's death.

So the choices are actually:
1) take action to end your baby's life, or
2) allow your baby to have a natural death.

No matter which path you take, you will grieve the loss of your child.  And that grief is significant.  There is no shortcut through it.  Or detour around it.  There is no choice.  You have no control over it.

As it is, society shuns mourning.  Everyone expects you to get over it and be back to your old self in record time.  

Terminating a wanted pregnancy perpetuates this expectation.  It becomes a secret to hide.  No one saw your baby, so to them there is no loss.  No allowance for grief.

How does that help a devastated parent?

And, oh by the way, termination goes against every instinct you have as a parent to protect your child.

“The key point is that there is no shortcut for grief. Getting over it sooner does not make it easier,” says Kuebelbeck. “If your baby is going to die, your heart is going to break either way. Why not do what you can to fill your heart first?”

[Source: Providing hospice in the womb, Roger Collier, CMAJ]


The choice we have as parents is really this:  How will you love and care for your baby?

For us, we knew taking action to stop Joan's beating heart would be irrecoverably traumatic.  It would make the loss and grief immensely worse and more complicated.  It went against every instinct we felt as parents.

We knew what would help us through the devastating loss of our daughter was this...

Recognizing, honoring and sharing her life with others...
Receiving support from family and friends...
Treating Joan with dignity in life and in death...
Creating memories to carry her with us for a lifetime...

Filling our hearts first.

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…