Sophie Rose - One Year On

Sophy's Rose first bloom, October 2012

My blogs this week are likely to be a little disordered, so please bear with me, my friends!

I tried to write this blog yesterday, on what would have been Sophie's 1st birthday, but there seemed to be a gremlin in the system and I wasn't able to access my blog.  Perhaps that was meant to be.

Sophie - an early scan

I heard the term "Angel Day" used this week, as opposed to birthday or anniversary, and I think I will adopt it from now on.  30th of October, Sophie's Angel Day.  I've been pondering the custom of celebrating birthdays - another year of our lives lived, and thinking about what a worthy tradition it is, since life is way more precarious than we in the western world appreciate.  Certainly way more precarious than I realized, before 29th October 2011, when an ultrasound confirmed that Sophie's heart was no longer beating.  It's worth celebrating every additional year beyond birth that our children live.  Before the discovery of antibiotics in the early part of last century, infectious diseases were the leading cause of death of children.  These days, if a child dies from a microbial infection, we in the western world tend to be surprised and outraged, and demand to know why.  Due to advances in medical technology, we think we have the "right" to a health baby, and a healthy life.  Medical technology is marvellous, but we do tend to think it can cure all, and things like pregnancy loss and disability only happen to other people, not to us or people we know.

In countries much less affluent than ours, people see death on a weekly or even daily basis, it is not a stranger to them, and I believe they are much better at accepting it, and dealing with grief (I will write a thesis on this later!!)  In our comfortable world, we use family planning to determine the number of children we have, and medical technology such as physiological intensive care keeps people, babies included, alive, and sometimes they do recover and go on to live long lives.

Since I'm indulging myself today in this monologue, I'll go on to tell you that, had Sophie been born alive, she would have most likely only lived for a few minutes / hours, or gone straight to the neonatal intensive care unit and died there.  I've often reflected on how grateful I am that she died in utero, and we didn't have the added trauma of seeing her slowly slip away with many tubes attached to her.  But maybe we would not have minded that, as long as she was still alive.  We will never know.  You see, Sophie died from a viral infection.  When an ultrasound confirmed that her heart was no longer beating, it looked like a simple case of "cord accident", as the ultrasound showed that the umbilical cord was wrapped tightly around her neck several times.  A senior Obstetric consultant advised us to consent to an autopsy, since, in his experience, whenever there is a cord problem, there is almost always something else going on, and restriction of blood flow is simply the last straw.  He described to us that you can take an umbilical cord, tie it in a knot, pull it tight, and as soon as you let it go, the knot springs open again, due to the gelatinous Wharton's Jelly present in the cord.  The only case of death due to true cord accident that he had seen in his career (where no other cause could be determined) was a case where, due to a genetic anomaly, there was no Wharton's Jelly present in the cord.  And he was correct in Sophie's case.  Autopsy revealed that a viral infection ravaged her body.  She had severe anaemia, and evidence of inflammation and viral infection in every major organ in her body.  Yet despite this, she grew to a normal size, moved normally in the womb, had a heart rate within the normal range, and to all outside observers, was a normally developing baby.  Isn't the human body amazing that it can do all this despite fighting for its life?!?  Both Sophie and I were tested for all the microbes (viral, bacterial, fungal) that are known to cause sickness and death in babies, but none of the tests were positive.  And do you know what - even if the virus had been identified, and I lobbied the government to introduce viral testing of some sort for all pregnant women, it would not have changed the outcome for Sophie.  There is precious little treatment for viral infections, even in our medically advanced world.  Medicine can provide physiological support, but the fact that viruses hide inside our body's cells makes killing them difficult.

The odds in most Australian baby books tell us that 1/4 pregnancies end in a loss before 20 weeks, and 1/135 end in stillbirth (death in utero between 20 weeks gestation and birth). Pretty scary odds, that you don't want to dwell on too much when you're pregnant or trying to become pregnant.  Due to the nature of genetic recombination and assortment that occurs when sperm and eggs are generated, every individual that is conceived is unique, and contains a genetic code that has never before been tested.  You don't know whether that code is going to "work" or not.  It may, by chance, contain disruptions in genes essential to life.

When I was pregnant with Nicole, I used to be offended if people touched my belly without my permission.  Once Nicole was born, I sometimes took offense if people touched her and cooed at her without my permission.  But now I see things differently.  A baby that makes it from conception to birth, alive, has already run a tremendous race. These people (mostly women, mostly older than me) who desired to celebrate Nicole's alive-ness were much wiser than I.  They knew how precious life is.  They knew that a happy healthy baby cannot be taken for granted.  

Sophie, just born

Now I know too.