The Only Ones?

We're not that unique, are we?

When I was pregnant with Joan, after receiving her Trisomy 18 diagnosis, I continued seeing the same OBGYN practice that I had been going to for years. The perinatologist that made the diagnosis sort of 'released' us back to my regular doctor for routine prenatal care since there was essentially nothing more they could do for us and my pregnancy was not high risk.

So back we went to continue routine prenatal care. Except everything changed. There is nothing 'routine' about carrying a child that is not expected to survive. Maybe medically routine, since physically my pregnancy was unremarkable. But in all other ways, definitely not routine.

My husband and I joked that we were celebrities at my OBGYN practice. (He came to all of my checkups since it became possibly his only chance to 'see' Joan on ultrasound or hear her heartbeat.) It is a large practice that sees, oh I don't know how many patients, but tons. And everyone that worked there, from doctors to nurses to receptionists and office staff, knew us by name and knew our situation. We were surprised one day when one of the doctors told us they were just talking about us at their meeting -- all of the doctors together.

It struck me as odd that we stood out that much. How was it that we were one of the only, or one of very few, couples that chose to continue their pregnancy after receiving a diagnosis like this?

We couldn't be the only ones that felt this way -- that chose life for our child -- out of all the patients they had seen in similar situations.

It made me worry that maybe there were other parents that felt like we did. But they didn't think they could continue on with the pregnancy after a devastating diagnosis. Whether they didn't know it was an option or they didn't have adequate support.  This thought broke my heart. Still does.

I often wonder about those parents who ended their pregnancy after the diagnosis. Were there regrets?

My hope, through the work we do with Joan Reach, is that every parent that faces a diagnosis for their child like we did will know that carrying to term is an option, there is support, and it can be a beautiful, meaningful experience.

Missing

A special guest post by Joan’s Aunt Teri

How can you miss someone that you never really knew?

It’s simple.

As a teacher, I sometimes forget to take attendance at the beginning of class.  However, I eventually, or sometimes immediately, feel a sense that someone is absent.   It could be the class clown, the girl who is always on her iPhone, or the quietest kid in the class. In a panic, I glance at the class roster.  Their absence is palpable. It is in the air, it is on your skin.

Someone is missing.

This feeling often takes over at family gatherings. A sneaking feeling that someone is not there; that a part of the whole is missing.  This sixth sense has greatly intensified after the birth of Vivian, Joan’s little sister.  Every milestone, everything Vivian does, reminds me of what Joan would have done.

With Vivian, there have been so many Firsts: First Smile, First Laugh, First Steps, First Everything.  I wonder about having had these Firsts with Joan.  She was also the First Born, a position which I would have shared with her.  

I am reminded of Missing, a song by Arcadia, a side project of 80’s supergroup Duran Duran. As cliché as it sounds, the lyrics in this song did not mean much to me until after Joan’s birth. [I always try to say her birth, not death; which tragically were one and the same.]

I thought I saw you smile

But now I don't see you anywhere

Whispering your love song in my ear

how can you touch me

when you're not really here?

Yes, Joan.  You touch us always, even though you are not here.

So, how can you miss someone that you never really knew?

It’s simple.

The Diagnosis

By Joan's Mom

The week of Mother's Day for us is also the anniversary of the days that changed our lives.  The 'abnormal' tests and the dreaded results.

On the morning of Monday, May 9th, 2011 I was jolted awake, sweating and crying, by one of the most vivid dreams I have ever had.  In the dream, I was sitting in the perinatologist's office and she said, "I'm sorry.  Your baby girl just died."  That's when I bolted awake.

The Friday before, we had our 20 week ultrasound visit.  The visit that is supposed to be a joyful, wondrous look at your baby and all of the miraculously developing organs.  Sometimes it is even the time when you get to find out if you are having a boy or a girl, but we didn't want to know.  We wanted to be surprised.

Our appointment was none of those things.  It was a dizzying blur of signs that something was not right with our baby.  Measuring too small.  Possible heart defect.  Two-vessel cord.  All 'markers' of a possible chromosome disorder.  The visit ended in an unplanned amnio, that I never intended to have.  And us going home to wait the weekend, my first Mother's Day weekend, for the preliminary results.

I spent the weekend resting as much as possible, as ordered by the doctor, and trying to convince myself that somehow everything would be okay.  That it was just a false alarm.  While my husband started the demolition stage of the spare bedroom renovation, what was to be the nursery.  I'd like to say the physical labor was a distraction for him, but I don't think anything could take our minds off of it.

By Monday morning I had done a pretty good job of convincing myself that the odds were in our favor and the test would come back negative.  Except for that dream.  The strange thing about it is, up until that point I was convinced that I was carrying a boy.  As if that little detail was proof that the dream was not a premonition. 

Just a few hours later, early Monday afternoon, I got the call from the same perinatologist -- the one we saw on Friday, the one from my dream.  I had gone to the mall on my lunch hour to distract myself from the dark cloud that had formed over me.  I had not been able to button my pants for weeks and it was time to finally break down and buy some maternity clothes.  I was leaving a department store, having just bought my first pairs of maternity pants when my cell phone rang.

The test was positive for Trisomy 18.

I listened to the doctor tell me that a genetic counselor would be calling me and calmly asked her how accurate these results were, even though I already knew the answer.  I hung up and left the store, called my husband.  I stopped back at work briefly to pick some things up and let them know that I was going home for the rest of the day.  The shock and numbness started to wear off on the drive home as the tears began to flow.

The rest of that day is a blur.  I remember crying on the couch, looking out the window and not understanding how it was getting dark.  The clock said 8 PM, but it must be broken.  I couldn't fathom how time and life were continuing on when my world had changed so completely.  Time stopped at 1 PM that day.  The earth stopped spinning on its axis.  Nothing would ever be the same again.

I wanted to return the maternity pants I had just bought.  I wanted to hide.  I didn't feel worthy of wearing them.  To walk around with my ever growing belly.  The badge of honor and pride of motherhood.  My baby was not going to survive.  I would outlive my first child.  My first daughter -- it was indeed a girl.  And there was nothing I could do about it.

I still can't walk through that section of the department store where I got the call, without thinking about that day and feeling the familiar pangs of panic start to build.  I wonder if that will ever go away. 

Pain of Discovery

By Joan's Dad

This is the short version. Joan was our first pregnancy and as such everything was a new experience to us. We went to our office visits and progressed (what we believed to be) uneventfully through the first half of the pregnancy. We had ultrasounds and saw our little one swimming around and moving from one spot to another, her little heart pumping the entire time, and her getting bigger with each successive visit.

I found myself in love with our baby from the moment I knew we were pregnant. It was love at first thought, I loved our child before I had even seen the first ultrasound, and every passing visit would bring me loving a baby that had arms instead of arm buds, ears where none were at the last visit, and a little fluttering heart that beat at that baby rhythm in the 140’s (which freaks you out the first time you hear it if you don’t know that’s their normal heart rate). I started to have a wide range of things that I was looking forward to, from watching my wife hold our baby for the first time, our families meeting him or her, bringing our little one home, to minor things like our baby’s laugh or smile. I simply started to build these future memories of all sizes.

We reached the Level II ultrasound commonly performed at 20 weeks. It’s the ultrasound where they scan the baby’s anatomy and verify that everything is accounted for and relatively properly sized. It’s also a common time for you to find out the baby’s gender. Our appointment was perfectly timed for the Friday before Mother’s Day. What a great way for my wife to have her first Mother’s Day! Our ultrasound tech was great. She spent lots of time measuring all sorts of things and poking Joan so she’d move to get a better view and measurements; and she was good not to reveal that Joan was, well, Joan not John.  We watched the entire time and were just amazed with how big our baby had gotten. The tech was relatively quiet, but that’s not unusual, doctor’s talk to patients, everyone else in the doctor’s office talks to the doctor.

When the doctor came in to give us the summation, I was expecting to basically absorb and nod until we could take our copies of our button nosed baby’s ultrasound pictures home to add to the gallery on the refrigerator. But when the doctor came in and started talking, I stopped liking her. She spent about 10 minutes couching facts with fluffy words and expressions. You know the things I am talking about; they are supposed to make you feel less bad, but in reality it’s like someone wrapping you in bubble wrap and then throwing you off a high rise building. They feel a bit better about it, but you’re still free falling and ill-equipped for the hard landing. She said that Joan had nearly every ‘soft marker’ that they used to test for a genetic disorder called Trisomy 18. On the doctor’s recommendation, an amniocentesis was performed to confirm her diagnosis. The sample for the amnio was taken and the results would be ready lightning fast in 4 or 5 days.

YAY!  Happy Mothers Day!! GRR!!

So what do you do in that situation?  How did I feel?  Helpless, angry, but mainly heartbroken.  We went home and we were both just in shock and becoming experts on Trisomy 18 as quickly as Google and a broadband connection would allow.  We were trying to unravel this enough to find the thread of hope that this diagnosis (if confirmed) would be manageable, treatable, curable, anything positive-able.  Google let us down at every turn.  Trisomy 18 meant a 90%+ chance that our child would not make it past her first birthday if she were able to survive to full term.  Words do not describe the feeling when that eventuality insidiously seeps into your logical brain and you can’t escape the fact that most of these dreams that you had for your child are now a source of pain.

This is where and when it all turns. We were in limbo. The worst limbo you could find yourself in. All of those memories that you think are in front of you as a growing family are in jeopardy and most are actually completely out of the question. What’s worse, is I had no idea what in the world I was supposed to hope for as all of the paths to hope for are lined with and end in such pain.  We could only hope that the diagnosis was wrong and that we’d get a reprieve by the additional test. Time passed that weekend as a friend and I demo’d the room that was to be the nursery. My wife’s first Mother’s Day had become a totally different experience then we had expected it to be just 48 hours before.

The Monday after Mother’s Day we got confirmation.  Barbara called me at work. She had just gotten the call that our daughter tested positive for Trisomy 18. So that was it, we now KNEW what we had been dreading since the doctor walked in the room at the ultrasound and started talking words to us that don’t belong in the same sentence. “1 in 6000” are the odds for a jackpot. “Life limiting” is not an adjective for a baby’s anything. The most immediate thing was pain, pain in my soul that my family is now facing a very different and more challenging future and I’m powerless to stop it.  Pain in knowing that my wife would be in even more pain then I was in and would likely stay that way for a very long time, pain in knowing that we could do our best and still be ultimately in the unimaginable situation of burying our little button nosed child.

I don’t have the words, which is why I am using so many.

The closest I can come is to say that emotionally, it’s as if I was swimming in quicksand at that pace you have in your dreams where you can’t outrun whatever is chasing you. I was moving slowly and sinking quickly. I bottomed out and realized that this was the worst thing that could have happened to our family and it came out of the best thing that had happened to my wife and I. That’s not supposed to happen.

Relatively quickly, I started to emotionally triage. The love takes over. The love motivates. The love redefines hope. Hope is no longer seeing your daughter smile or seeing her running through the yard giggling. Hope is now getting another day with your daughter while she’s still literally being hugged by her mother every moment. Hope becomes knowing that you’ll be able to be with her when she passes and make sure she knows nothing but love for the entirety of her life. Hope becomes planning for all sorts of eventualities, from lining up home nurses should she make it home from the hospital, to choosing where she’ll be buried when she’s done being surrounded by our love. It’s not the open-ended hope of an option filled life, but rather the hope of solemn determination to do what you couldn’t have imagined until you’re faced with it.  I found it to be a hope that brought me peace when there was not much comfort in the circumstance.  Our love for our daughter was never tethered to her health, only the amount of time we had with her.

Happy 4th Birthday, Joan.

The Yellow Butterfly

Right around the time that Joan passed away I started noticing yellow butterflies.

A small delicate yellow butterfly among a flock of monarchs.  Or a single yellow butterfly fluttering across the yard.

Each time I felt a keen awareness.  One of those moments where everything else fades away.  And I always thought of Joan.  No, more than that.  I felt her presence.

It wasn't until a while after that I stumbled upon the significance of the yellow butterfly.

While it is common to associate butterflies as a symbol of the soul, the Irish believe a yellow butterfly is an indicator of departed souls resting in peace.

How beautifully fitting. 

Thank you for that sign, Dear Joan.  That beautiful gift.

Though your body was imperfect, your soul was beautifully perfect in every way.

What signs do your loved ones send to you?

Decision, Religion, and Love

A guest post by Joan's Dad

During the time my wife was pregnant with Joan and the time since, there is a question that gets asked and it’s tied to an assumption.  It’s a question that gets asked more for confirmation of the assumption behind it than any other reason.  The question is essentially in long form, “Why are you going (or putting yourself) through this? Is it a religious decision?”

This is such a strange question to me and a telling one at the same time.

I say strange because if you’ve got a loved one that is stricken with a fatal diagnosis, you’d do whatever you could to give them comfort and love and let them know what they mean to you.  When you comforted them it would have very little to do with religion and more to do with love for the person and your desire to show them the love that exists for them.  Love is our greatest asset of value and kindness is one of its manifestation.  We all have different levels of physical riches, but our ability to love greatly and act kindly is completely independent of our bank statement.

I also said it was telling.  I believe it to be telling as it is, essentially, a leading question.  The way it’s typically offered it is treated nearly rhetorically.  The assumption is that “GOD” told me that we had to continue with the pregnancy.  It had to be that somewhere there was a burning bush or a talking tree or some dream with clouds and trumpets where some booming voice told me what I should do.  That had to be it, because I’d have been out of it to CHOOSE the pain that continuing with Joan would surely lead to.  Take a step back and realize that.  For me to love, support and fight for our daughter, the more palatable explanation involves flaming/talking plants?  I’m an engineer.  My primary means for processing the outside world is through observation, logic and repeated results.  While I can assure you that if I do encounter a talking tree it will have my undivided attention until the fall when the leaves are gone and things get awkward as it stands there naked, I can also assure you no trees are talking to me.  To me the whole assumption is comical.  To clear the air, let me say that the decision that we made to continue our journey with our daughter was the easiest I’ve ever made.  It was not an easy decision because of religion, it was easy because it was something done out of a parent’s love.  The result of the decision was challenging, but choosing to fight for as much of our daughter’s life as we could beat out of the odds was like deciding whether or not to pour gasoline over my head and play with matches in a fireworks factory.

Life is all things in a spectrum from pain to joy at one time or another.  The lows don’t make the highs any lower.

Knowing that we wouldn’t have our daughter for as much time as others didn’t take away our love for her and our desire to embrace her life on its terms without concern for our own.  I didn’t choose to have a daughter with a life-limiting diagnosis, I chose to love my daughter no matter what.  That’s what love is.  To me that’s what parenting is supposed to be.

What color are you painting the nursery?

How did you respond to questions about your baby, while you were pregnant?

I have been asked this question when talking about carrying Joan to term knowing that she had a life-limiting condition.  My answer was, "I avoided it as much as possible."  

Inevitably well-meaning acquaintances and strangers – in the grocery store, public restrooms, etc. – see you pregnant and ask questions.

When are you due?
Is it a boy or a girl?
What color are you painting the nursery? 

And my personal favorite...

Are you excited?

For a mom carrying to term with a life-limiting diagnosis for her unborn child these questions are often difficult, to say the least. For me, this was one of the most difficult parts. Repeatedly explaining that our baby would be born with profound challenges and slim odds of survival was like reliving the devastating news each time. While we were still processing the tragic reality ourselves.

So I tried to avoid these exchanges as much as possible, or answer as briefly and vaguely as possible and escape quickly.

How do you tell well-meaning people that your baby is not expected to survive? That you are not setting up a nursery. That excitement is not the predominant emotion that you are feeling. Instead you are experiencing tremendous grief, anxiety, and a myriad of mixed emotions. While trying to embrace the precious short time with your baby.

So if the person was a stranger or someone I was not likely to see again I didn't tell them. I pretended that I was having a "normal" pregnancy. I even lied sometimes. I didn't tell them that my baby would likely not come home with us. I found that if I did I would usually get one of two reactions.

A look of horror. Pity. Awkward discomfort. To which I would become the comforter, trying to make the situation less unpleasant. This reaction was usually followed by unhelpful, insensitive comments.  The worst of which being some form of, Why didn't you terminate?

Or I would get responses attempting optimism such as, Maybe the doctors and tests are wrong. Can't they do surgery and save the baby? Hope and pray for a miracle. Somehow it'll turn out okay.

An important part the carrying to term experience is accepting that your child may not survive to birth or ever leave the hospital. And embracing a different kind of hope. Hope to meet and hold your baby. To create memories during the pregnancy and any possible time after. So these latter comments are not helpful.

Wouldn't it be wonderful if parents like us could openly share their experience with others, even strangers, without fear of insensitive reactions? That people would respond with compassion, understanding and awareness that sometimes babies don't survive. Because parents need and deserve compassionate support.

If you carried to term with a life-limiting diagnosis, what was your experience when answering questions about your baby during the pregnancy?

Dinner With…

A guest post by Joan's Dad

Grief is certainly a universal thing that we all experience, but we all do it so, so differently. The September after I graduated high school a friend of mine, John, was killed in a car accident. He was just starting his senior year of high school and was driving with a friend of his, Kurt, who was also killed. I was at the joint viewing and it was an incredibly difficult thing to see as both families were there with such a look of shock. About 6 months after the viewing, I was told that John’s father had built a tall privacy fence around his yard, and that he had John’s truck put in the yard.

I worked in the only convenience store in town at that time and still knew a lot of people that lived near and had known John. The thing that I remember most is having the same conversation about John’s father and the truck over and over. People would comment on how odd or awkward it was. My comment was always the same. I would say that I have no idea how you get through that grief, but if having that truck in the yard gave his father any peace at all with what had happened to his only son, shouldn’t he be allowed to have that. I remember having this same dialogue so frequently and it just struck me how odd it was that people would judge anyone’s handling of grief or the desire to have something that gave them a smell, or sight, anything of their loved one.

For all of us who experience grief, we have to find different personal outlets that help us process it. Since we lost Joan, we've found a few things that give us peace, that might not for others. Having said that, I believe that it is a universal thing that you want to hear your child's (or any loved one's) name, as it is their only remaining "voice". With that in mind, we had family over for a party recently and when we called in a food order, we put it under the name "Joan". It was our way of including her in our party and had the added bonus of letting us hear her name from others in a completely innocent way. So I invite everyone to try it as well, next time you get take out or are asked by the hostess for a name, tell them John, or Kurt, or Nathaniel, or Michael, or Nora, or Noni, or Sheila. Or Joan.

a father's day

A special guest post by Joan's Dad.

How many kids do you have?  That should be an easy enough question.  It’s a question that really seems like a throw away, like, “How was the drive (or flight)?” Or “How was the food?”  It’s a softball.  The kind of question that’s more to fill time and either keep a conversation going or start it.  It’s a warm-up swing question.  There should be nothing wrong with it.  Except.  Except when the real answer is a bit more painful than recounting the number of children you’ve gotten out of diapers.  In that case it can detonate the conversation like someone out for a stroll stepping on a mine in a dormant battlefield.  It’s just so unexpected.

How do I answer?  My most common answer is to use some permutation that we lost our first daughter and her little sister is at home driving her mommy crazy.  Why do I answer that way when I know that it can make people uncomfortable or clam up?  I answer that way for a few reasons.  First, it’s the truth, and nothing in the truth is linked to comfort of anyone, A is A.  Whether it gives you chills or a warm and fuzzy.  Joan is my daughter and she’s gone, but my love for her is not.  Secondly, I’m a parent.  Parents talk about their children.  I want to talk about mine.  Not at length, but for a second in conversation, I’ll mention the children that I love just like any other parent would.  Third, there is nothing in me that has any desire to disconnect with my daughter or her memory.  Ever.

Father’s day is an odd one.  I appreciate the sentiment of it, but I always view it through the prism of my life and that means that Father’s Day is about my dad, not me.  Father’s day is also when you get asked about your children the most by people who are generally well-meaning.  They understand that as a father you want to talk up your children, and they are giving you a chance to do so.  Queue my answers and the ensuing gallery of stranger’s faces from lack of recognition to genuine sadness and all stops in between.

The Father’s day while we were waiting for Joan was specifically difficult.  We knew about the diagnosis, we knew statistically what we were facing and most outside of our inner circle only knew that we were pregnant.  There were a lot of things that I couldn’t say but wanted to.  It was a challenge, and I just laid low and let it pass.  Since that first father’s day, I’ve felt largely the same.  I know that there are traditions with ties or ceramic ash-trays that I am sure we’ll go through with Vivian, but we’re just not at that stage.

As Father’s day is a pseudo holiday there is some level of giftery. Hmm. I think that I just made that up.  I’m fine with having made up that word, and I can’t believe it hasn’t been made up previously.  Giftery brings us to another classic question, “What do you want?”  This has become the easiest question I can ever answer.  

I’m a bereaved parent.  Like every other bereaved I’ll want the same thing every time I am asked that question until my last breath & I’ll want it fully knowing that I can’t and won’t ever get it.  

I’m not unique, I just miss my daughter.  It’s that simple and that complex.

My little girl was a fighter

Trisomy Awareness

On more than one occasion I have received comments like these from various doctors, both while pregnant with my daughter, Joan, and since losing her to Trisomy 18:


Those babies don't survive.

Your baby will never be normal.

Your baby will never be able to communicate with you.

Your baby won't be able to eat normally.

Your baby will never smile at you.


I distinctly remember a conversation I had with a doctor not long after we lost Joan.  When I told him that I had a daughter that passed away from Trisomy 18 at full term, he asked if I knew about the politician, Rick Santorum, who had a then 4 year old daughter with Trisomy 18.  For a second I was hopeful, thinking he was not going to be like other doctors.

Until he continued with, "She doesn't have full Trisomy 18.  It must be a less severe partial trisomy.  Babies with full Trisomy 18 don't survive.  You know your baby would not have been like a normal baby."

To this doctor, and many others... Bella Santorum is now 6 years old, living with full Trisomy 18.  Bringing joy to her family and many others.

While survival statistics are bleak for children with disorders like Trisomy 13 and 18, some do survive and thrive.  Their physical and intellectual disabilities should not determine the value of their life.

Let's raise awareness together.