Shoulda woulda coulda...? Maybe he didn't have to die?

Way back in the day…  I didn't take phone calls, I didn’t accept visitors... I didn’t return voice mails left asking how I was doing.  I had never felt more alone and confused in all my life. 

At about 3 weeks post loss, I sent out a mass email to my family, and few friends.  I pretty much said, “I’m broken open, I love my son, I have no one who can relate, I’m alone, I’m sad, I’m filled with undying love, I AM SOMEONES MOTHER, time moves forward and I don’t understand a single thing… I will accept replies but I already know not a single person understands.  Thank you, with love, Veronica.” 

Sometime around that time, my mother called me.  She had found out some shocking news.  Another woman had given birth to a still baby the same weekend I had.  She said there was talk in her office going around about a baby being born who didn’t make it…and it wasn’t mine.  She asked around, and apparently a co-workers friends niece had a baby the last weekend of February that was born still, too.

My mother wanted to pass along my email address to this person.  “You’re so good at expressing yourself, and maybe you could help her understand... and work through her feelings?"

I didn’t know what to say.  I didn’t want to be a poster child for stillbirth.  I didn’t know what the hell happened to my life… and I didn’t want to be the one to tell someone else that it will be ok…because god, it’s so NOT OKAY.  Ever.  I didn’t want this other women thinking that I was going to push some kind of understanding on her… acceptance… grace… wisdom…. No way.  I was just as fucked from all this than anyone else would be.  I had nothing to offer. 

But I said okay.  I agreed to let this woman have my email.  I told my mother to let this co-worker know to tell her friend that this is just if this other woman wanted it.  An email address of someone else whose baby died.  Nothing more.  I’m not “here to help”.  I’m not “someone to turn to”.  It’s just an email address to tell her story to.. if she wanted to.

It was months later when I received an email from this woman.  It was early June, and I was in B.C on our “get away”.  She told me she was sorry I lost Alexander.  Told me she is here for me if I ever want to tell my story.  Told me she can be the one to understand it all if that’s what I needed. 

I scratched my head.  “What the…?”  I didn’t reach out for help…  Why is she trying to offer me something I didn’t ask for…?   I felt defensive.  I wanted to reply – wait a minute lady… my mother asked me to give you my email if you needed anything.  I remember being turned off.  I was 3 months post loss.  I was on a trip with Daniel, and we were feeling…kinda okay…we were trying our damndest to feel ...anything other than totally ruined. 

I look back, and I laugh at myself.  I often have this all assuming knowledge take over me that I know what everyone else is feeling.  And in that moment reading that email from this women – I certainly possessed that very foolish characteristic. 

Initially, I wanted to email her back.  Right away.  I wanted to send her every single blog I had found, and was reading.  I wanted to point her towards Glow in the Woods, and Angie’s blog.  I wanted to tell her about Sally, Renel and Josh...  they were some of the first blogs I stumbled upon about full term stillbirth.  I wanted to tell her that yes, I was getting by...and this is what I could offer her. 

But I stopped.  I left it alone.  I still had about 4 more days in B.C, and I wasn’t caught up in my normal routines of reading blogs all day.  My head wasn’t there.  Every day in B.C hurt because I knew why we were taking that trip… but I didn’t live in my routinely babylost world.  Other than checking my email that one time, I wasn’t online.  I was out climbing mountains, driving along the coast, eating shellfish, and buying handmade pottery and glass jewelry.

When we got home…I opened my email and reread what she sent me over and over.  I wanted to reply…but I didn’t know what approach to take.  I didn’t know this women.  I didn’t know what kind of support she had around her.  I didn’t know if she was looking for other babylost parents and was wanting to devour every single story that mirrored hers.  I didn’t even know her story!  I didn’t know if she was full term, or if there were complications in her pregnancy or if she was shell shocked as I was.  Did any of that matter?  Would it matter to her? 

I decided to tell her about my pregnancy, and the aftermath.  I didn’t want to get too emotional, or let myself come across to be broken into pieces …all distraught like… I just wanted to offer something that maybe she could connect with.  I just didn’t know her – I didn’t want to assume she’d be interested in how I felt.  But she had mentioned in her email to me that she felt her loss was preventable.  She blamed her OB for not “saving” her baby girl.  I could relate to that.  I don’t blame my OB, per say, but I do feel that my baby dying wasn’t inevitable.  So.. I emailed her about that. 

In that email, I felt I got a lot of my "story" out.  And even though I didn’t receive a response (yet – I asked her about her daughter, her name, her pregnancy, her story.  Anything she wanted to tell me.  I sent it late June) it gave me the ability to start telling my story to other people.   Around the time I was gearing up to send her a response, I participated in “Right where I am” and I started reaching out to other BLM’s and sharing my story more and more.  I used this snippet from this email to give myself a base.  As you can see, I’m not a woman of few words!! But it was hard for me in the beginning to get started… to get the ball rolling with what the hell happened in my life.  And I feel I express myself better when I know my audience.  In an email, I'm talking to one other person… and in knowing that, I feel I can simply …ramble flow. 

So as unravelled, and disorganized as I've told my story to others... I'm going to share it here on this blog.

This is the “why” behind my stillbirth.  This is the “reason” my son died at 41 weeks and 1 day pregnant, and then was born the next day, still.

(Note:  There are a few women I’ve already emailed, and shared this part of my story with… so yes… a lot is 100% copy and pasted!)

***

We received our autopsy results back.  They remain "without adequate conclusion".  There wasn't an exact cause of death... or at least not one that the doctor performing the autopsy is comfortable printing in black and white... but there was speculation on the report and in the findings – maybe it could have been prevented.  And I say this with a little bit of back up from my social worker, OB and my GP.

"Oh, this won’t happen again - next time, you will be monitored at 28 weeks until you reach term to make sure the next baby makes it.  And you'll be induced.  No question.  Your next baby will be fine."

Well, what about this one?  What about my first one?  What about my dead one?  Why not him too?

Still leaves me heartbroken, that last statement.  The wind taken from my sails.  My poor guy didn't get the chance to make it out alive.  Because the truth is (as much as my OB REALLY doesn't like to admit it) had my first born been closely monitored during my last few weeks of pregnancy - just 2 or 3 more ultra sounds- they probably would have noticed a change in his state... and seen he reached a point where he was "surviving" and not "thriving".

There were obvious signs of asphyxia, and they found an infection in his cord and lungs.  What caused his ultimate demise… they cannot say.  Did the infection cause the asphyxia?  Was he alive while infected for too long and could no longer survive in the very trying environment that is 41 weeks gestation?  Did he contract this infection, and then lean on his cord… and was then too weak to free himself?  That is what remains without adequate conclusion. 

I was 41 weeks and 2 days pregnant when he was born, dead.  Upon delivery, they saw no cord problems.  He was perfect looking.  On the autopsy report, they noted he had the appearance of a post term fetus.  Yes, that was apparent to me too.  He didn't look like a new born.  He looked awake... he looked, done.  He was 8 days overdue.... and only dead for a few hours before delivery on the 9^th day... he looked mature, and relaxed. 

I was due on Feb 18th according to my 20 week scan.  But according to my LMP, my due date was Feb 21st.  Everything was "great!" "any day now!" "first timers always go late!"  I had one biophysical profile when I was 3 days past my due date (Feb 21).  I was measuring 40+3 exactly.  The doctor only monitored him for 7-10 minutes, and gave him a perfect score.  Said his practice breaths and movements were topping the charts!  I have my reservations about this doctor.  I've said it once, and I'll say it again... I don't think she saw what was really going on... I think she assumed, and saw what she wanted to see.  Because how could such a healthy boy take such a turn just a few days later? And that is where I feel another ultra sound should have been in order days after.  But the doctor scheduled another one a week later... said I'd probably go into labour before the next appointment.  My son died inside me sometime between 8:30pm-11:45pm on Sunday Feb 26, 2012.  When we got to the hospital around 1:30AM...his heartbeat was gone.  I-was-shell shocked. 

(It was the night of the Oscars.  I was on the phone with so many family members, answering the same questions, "nope, still pregnant", all that stuff.. feeling him move, and kick while I was talking.  At 8:30pm, I made my way to the couch and dozed off watching the ceremony.  At 11:45pm, I was woken up by... nothing.  No kicks (as usual) or side to side back rolls (as usual). Just a quiet belly.  I instantly felt the stillness to be too heavy, and eerie. I drank juice, jiggled my belly around, and tried getting into bed and laying in my "standard" position... and still nothing.  I cried, and woke Daniel.  Told him I wanted to get assessed... baby wasn't moving.  And off we went...)

I will jump to 3 months later when we got the report back.

They found an infection in his lungs and in his cord.  This infection was supposedly "impossible" to be able to reach the baby.  As long as the membrane (bag of water) is intact... the baby is at ZERO risk of contracting an infection caused by GBS bacteria.  Yet, the reports say that the nurse and stand-in doctor who was covering for my vacationing OB broke my water after being admitted, after declaring my baby dead (which they did), so how was it this infection was able to reach my son? 

This is something I've stewed about with my doctor during several appointments.  My OB checked my cervix at 39 and a half weeks (Feb 15)... broke my mucus plug while doing so (she was quite aggressive!)... she was going on vacation on Feb 25... she wanted me in labour before then... I bled for 5 days after that February 15th appointment.  I didn't feel that was normal.. she said it was... what was I to do... ?

My theory...just a theory... She dislodged my plug, stretched my cervix in hopes to move labour along... and somehow allowed the GBS bacteria to penetrate the membrane, and reach my babe.  The autopsy report shows that the infection was slow moving (babies are born infected..and live!  It doesn't instantly kill a new born)... and the fact that it was in the tissue in his lungs, means he was alive when he contracted it.  He didn't die instantly.  We wasn't just gone out of nowhere.  The bacteria made its way in... it got to the cord... which made its way into his lungs...restricted oxygen... he struggled to live (for days possibly)... but then died. 

But I don’t know, I don’t know…  I don’t know.

My grief counsellor likes to steer me away from 'my theories' .. They’re not exactly backed by a science… or evidence… there is no time frame stated regarding when he became infected in relation to his last efforts to live...so, why do that to yourself.  Why? 

But the question remains… why then? Why did this have to happen...?

***

I reported to my OB on Feb 24, the last day I would see her before she left for her month long vacation, that he was moving too much.  It was a 10:00 am appointment.  I had had a rough night with the babe.

"Too much?!" she exclaimed, "We don't worry about too much movement - as long as he's still in there moving around, he's fine." 

I then insisted, "his movements were rhythmic, unlike anything I've felt before... almost like he was doing a constant somersault.  As if twisting his head... around and around".  I felt worried.  I was too over due.  I was a day away from 41 weeks.  I didn't want to be induced.  But I didn't want him to be in danger.  I felt - for some itching reason - I was dangerous now. 

I was 40+6.  I think she was thinking more about starting her vacation than paying attention to the 40+6 pregnant woman telling her that something about her baby was feeling off.

She then walked over with the Doppler, put it to my belly, listened for 4-7 seconds - didn't record his bpm - and said, "sounds great to me" and then checked my cervix again. 

She said I'd probably go into labour within 48 hours.  She threw out the need to induce at the 10-14 day overdue mark.  I probably wouldn’t make it to that point.  I'll meet with her substitute doctor on Monday (just in case) to talk about induction... but she reminded us that I was looking to be 48 hours away.  I was 3 cm dilated.  Labour would be a night or two away....

What was I to do?  Who was I to protest...?  She got me excited.  She convinced me everything was OK.  She was the doctor...

 

That was a Friday.  He kicked, and rolled, and poked his way around for the weekend.  We were running errands, and trying to get some last minute things done knowing we only had the present - any hour I could start to contract.  Labour was now in sight.  Things were going to start.  We were excited. 

I felt exactly the same all weekend long. 

To my calculations, he died roughly 60 hours after that Friday morning appointment. We learned of his death within hours after that.  I didn't go into labour on my own as my OB had predicted.  He died instead.  I was induced within the 5 hours following.  I delivered my boy Feb 27, 2012.  4:51pm. He was 7lbs 13 oz.  After 41 weeks and 2 days of pregnancy, Alexander was born, still.

***

When sitting with my OB, during a follow up, she told me she had contacted one of the high risk doctors at the head of pediatrics at her hospital, and collected some information on GBS coming in contact with babies before they're born - before the water breaks.  She told me that it's so very rare.  So rare that there isn't even a statistic she could give me.  The high risk doc told her he had 2 incidences in his entire career where positive GBS results were causes of stillbirth.  And he has had many cases where babies/fetus'/infants die due to this, that, or the other... and only 2 stillbirths were caused by GBS infections developing in utero. 

A once "impossible" occurrence.

Someone had to draw the short straw...?  I don't know.... pretty crazy that babies die.  Rocked my world for sure.  I guess the high risk facilities are doing their best to inform OB's about what "could" possibly be possible?  My OB openly admitted to not knowing that strep B could come in contact with an unborn baby.  She used very definitive phrasing while I was in her care.  "Absolutely not", "not to worry at all", "Nope.  Not an issue".  And she's been doing this for 23 years.  I guess I really am just THAT unlucky... or she's just THAT stupid.

***

After all the research I did in my initial months out after the stillbirth, I no longer believe that these things happen out of nowhere.  I no longer believe that there is an inevitable statistic that some women fall victim to. 

Maybe I'm wrong.  Maybe one day I'll feel different - some days I do.  But I don't believe in magic... in a bad sense.  So why do babies disappear?  It's not magic... it was neglect.

I believe that there is too much of a relaxed approach in the third trimester, and that doctors leave it up to "chance".  Because most doctors think, "why bother women having living, healthy, breathing babies on the other end.  Why bother with machines and checking, and poking, and questions.  Why scare anyone?!?"

And the ones with the stillbirths?  "Well, some things are out of our control." ...huh, interesting...

I feel that not enough thought and examination has gone into those few babies that die.  I for one did not receive any follow up questioning regarding the last days of my baby being alive.  No one asked me if I felt there were any signs.  Nothing was documented regarding those last few nights of my pregnancy.  That one night of really weird movement didn't make it on to anyone's radar.  Preventative measures are always so well used AFTER THE FACT.  But I for one - not only because of what I've gone through, but especially so now - believe there should be standardized 3rd trimester ultrasounds to gauge the baby's capacity to survive to term... and then their ability to survive should things go over due. 

I don't know.  I'm not a doctor.  I have no medical background.  I have no degree in such things.  My baby died...and I don't think "nothing" could have been done... I think that maybe there was a way he could have lived... that's all. 

***

I was told when I was GBS positive that 40% of women are positive, and that it's a standard third trimester test, and a standard third trimester result.  The only thing that I would have to do is go straight to the hospital when my water broke so I can receive antibiotics so the baby does not contract the bacteria, and get an infection from travelling through the birth canal.  I remember at my week 36 appointment, I was told I was GBS (strep B) positive.  There was a resident doctor there... "playing" doctor if you will.  My OB was in another room, and this dumb girl (excuse me - I know it's rude... but she gave me so much incorrect information that my OB had to clear up in my next appointment) was telling me that I was positive.  I had so many questions.  I don't think she answered one in all the talking she did AT ME.  I wanted to know what it was, and why some women are positive. When my OB joined the conversation - she gave the simple answer of "oh, we just don't know... it's like the probability of a yeast infection... some women get them, some women don't". 

And that was that. 

But when I pushed the issue regarding the risk to the baby, I was always left with "absolutely not, no risk until you go into labour... and after that, as long as you get to the hospital and are treated within 4 hours of delivery, the baby will be fine". 

***

I questioned my OB in my follow up appointments after he died.  You can imagine her dismay.  She didn't know what to say.  She resorted back to her standard, safe response... "sometimes we just don't know why".  When I question her about the aggressive exam she performed, and broke my plug, and in turn, I bled for several days.... she ensures me that had NOTHING to do with him contracting the infection.

Funny how some things "they just don't know"...but she is so sure she had no hand in it.

What if her instincts were heightened that Friday morning, February 24th... what if she could just read my mind, and feel my fret, and know that these feelings were REAL.  They were not pregnancy whoa's.  What if she just sent me off to me monitored?  What if her instincts told her to do an NST – now, today – just in case…

would it have been too late?  would they have induced me and he die during labour? would he be born alive with an infection...and then.. die?  Or would he have been fine…

And truth be told, I'm not angry at her.  I’ve seen her a few times since.  She's been one of the more gentle people through all of this.  She's been an OB/family doctor for 23 years.  That's why I went with her.  I'm her 4th stillbirth in all that time.  (I asked her after the fact.  I would NEVER think a stillbirth would be in my future, so why would I EVER ask...) She has to believe that she couldn't have done anything more.  Maybe she used to beat herself up after a stillbirth…maybe she used to fall into a deep depression after losing a baby…but these days, I believe she has to let herself feel as if she could not have done anything different.  She has to keep herself sane. 

I do feel she got a little too sure of herself at the end... assumed everything would be fine - because things are always fine. 

I told her about swollen, numb hands during my week 34 and 35 appointments... she shrugged it off and told me I was lucky I wasn't reaching term in August. Later, while in the hospital after he died, but was still pregnant, I was diagnosed with pregnancy induced carpal tunnel syndrome.... and it took 5 weeks post delivery to regain the full use of my right hand. 

My blood pressure was low during several appointments... and my OB didn't bat an eye. I later learned after researching causes for stillbirths that sometimes low blood pressure can be dangerous as your blood pressure drops at night when you're asleep... and can put growing babies at risk of not getting adequate blood flow.  When I brought up that factoid at a follow up, she said it's so rare of an occurrence that there really is no point in mentioning it, and it's only HIGH blood pressure that they monitor.

Oh, and the movement.  If I had just taken myself in that Thursday night when he was moving all crazy like.  It was a different babe inside me at that point.  "this is not how my baby moves?  What's wrong with this child??"  If I had just done something other than lay there and wait for it to stop.  I read - after the pregnancy - that ANY change in a fetus' behaviour approaching term should be suspect.  Too much, or too little.  Both can be signs of distress.

...but when I told her that Friday morning... she so easily answered... "oh we don't worry about too much movement..."

Just the little things, you know, they add up.  The more I've looked into all of this, the more I feel how unbelievably blindsided I was.  The more I recollect... the more I see how much of a number I was to the doctor's office.  I was completely dismissed to hold any risk - by default, not by evidence.  Just pee in a cup, blood pressure, weigh in... go home and have your baby already!  I don't know what I should have done to make things turn out differently.  I always thought, if something is wrong... then the right people will surely know. 

***

I felt very weary that last over due week of my pregnancy.  I felt very... off.  A few days when Daniel would come home from work, I stood in the kitchen with him...confused.  "Why am I still pregnant? ... I shouldn't be pregnant anymore."  He shrugged me off.  He thought I was just fed up.  And truthfully, I wasn't!  I was okay.  That's why I didn't insist on being induced.  I felt fine.  My back felt good.  Other than my right hand being totally M.I.A, I was ok with pregnancy symptoms.  I didn't want to come across as  'freaking out first timer, oh lord help me, just get this baby out now'... but I just thought I should have been done by now.  My doctor predicted several times around the 35-38 week marks that I'd go early.  And then, after that, she said I'd probably go late.  I found it very peculiar that I was still pregnant.  And I couldn't put my finger on it.

And the "wtf is going on?" game got worse...

I woke up on 4 days over... 5 days over... baffled.  "wtf is going on??  I'm just going to be pregnant... FOREVER?!?"  I always felt the same... the nurses were asking me for weeks if I was having contractions, or feeling signs of early labour.  And I always said no!  I always felt the same!  I had cramps, sure.  Tightening of the abdomen, sure.  But everyone was blowing so much bullshit up my pipe, telling me.. "oh, you'll know!  you'll know when it starts!"  So what..? Was my tolerance just super human, and what I perceived to be cramps and tightening was actual early labour???

***

On that Friday morning, February 24th... we drove to the doctor's office.  Daniel took the entire day off so we could continue preparing for our new arrival.  I woke that Friday morning feeling very dark.  Filled with fear.  Filled with doubt.

"OK, so we're going to head downtown after the appointment, and get the stroller."

"No, let's just wait..."

"What?! wait for what?? it's any day now.  What exactly do you want to wait for?"

"I just want to wait until I have this baby."

"By then, it will be too late.  we need to order it now, it might take weeks before it's ready.  Why could you possibly want to wait any longer?"

...   silence.  tears start to warm my eyes ... ...

"Veronica!  What's going on?"

"I just don't know if we're ever going to have this baby.  This is some kind of stupid joke.  I shouldn't be pregnant.  I just think we need to wait and see.  Everyone keeps telling me it's any day now... but where is it??  (now crying) Nothing is changing, nothing is happening... I don't know if we're actually going to have this baby, EVER!" 

Daniel threw his head back in disbelief.  "What are you talking about?!?!  Do you not see how pregnant you are!?  Of course we're having this baby.  Stop procrastinating, and let's just get this stroller so we're not always stressed about it!"

I sat silently, crying.  We were minutes away from the doctors office.  I didn't like that I got so upset.  I didn't like that I was going to get to the office, and look fragile, and weak...incapable of keeping it together while so pregnant. 

"oh, look.  She's done.  You've had it, huh mama?"  I haven't had it!  I'm not done!  I'm strong as an OX, I'll do this forever!  I'll never throw in the towel!  (made up scenario in my mind in what I thought people would think of women who want to be me if I asked to be induced before labour)

I opened the window, and let the crisp February air dry my face.  I blew my nose, and coughed out my last bits of emotion.. and straightened myself up for the appointment.  I didn't think the baby would or could actually die.  I just honestly felt like I would forever be the pregnant women.  "Look, there she is. 62 weeks pregnant.  Any day now..."

We went to the appointment that morning, and that was that.  We told her about our fears.  We told her about his odd, uncharacteristic movements.  And that was that.  She made everything fine, and gave me all the reasons to wash my worry away...

 

I wish I hadn't composed myself.  I wish I hadn't calmed myself down in the car.  I wish I had gone into that appointment, crying, worried, nearly frantic... maybe they would have done something.  Maybe that would have been the game changer.   Maybe that would have saved his life. 

I wish I wish I wish....

***

I've been stroked gently with words by physicians, and social workers.  "You will have more children.  These things shouldn't happen.  But unfortunately, they do.  They shouldn't happen to you, or anyone you know.. but they do.  But, I assure you, you will go on to have more living children."

I know.  I believe it.  But I'll always need Alexander to make it as much as I need the others to make it too.  I'll need him to be safe, and cared for as much as any other baby I have.  He is my child.  He is not a pregnancy gone wrong.  He had just as many odds in his favour as the next child.  For some reason, Alexander lived in a world where him dying was acceptable.  He lived in a world where doctors say, "one, but not two of yours will die."  That is unfortunately how I've summed up my health care.  I wish we lived in a world where no matter if it's your first, second, or tenth child...babies dying is unacceptable. 

Thank you to anyone who managed to read this extremely long, and maybe over written post.