Monday, February 19, 2018

Five years and 4 days

For the Grace of Joe is now available in most countries on Amazon. For US orders go to Amazon for the ebook or paperback.

Canadian orders can be placed directly with MPower Books. The total cost is $22.00 Cdn (shipping included) and payment can be made by e-transfer or Paypal to

This book was written for families who are where we were. You are not alone.

Cover art: Steven Hoke

Saturday, February 9, 2013

Life will never be the same

I'm currently 24 weeks pregnant.  Seven weeks ago we had a routine ultrasound.  It was the first time in my life that I didn't lay awake worrying about what they'd find.  I'm going to call that my last night of peace.  On the way to the hospital we joked about having the doctor write down the baby's sex and sealing it in an envelope.  We would open it only if we both gave the launch sequence.

An hour later I was asking my partner if we could find out so we could name the baby in case the room full of specialists' predictions came true.

Let me back up a little.

December 28, 2012

The ultrasound technician wasn't saying anything during the scan.  I was asking what we were looking at and telling her what I had just learned in Biology 101 in university.  She wasn't really smiling or responding so I said are you seeing ten fingers and toes on there?

She zoomed in and showed me the baby's left hand and said yup, there's a little thumb and four fingers...on that hand...

We had been there twenty minutes and she put her hand on my arm and said I'm going to stop here to go get the doctor.  There are some problems with your baby.

I glanced over at my calm husband with a knowing look - I know honey, we've been here before.  These assholes are going to try and scare us.

"What problems?" I asked not at all worried.

She said there were issues with the kidneys, brain, heart, stomach, mouth/nose, jaw, feet, hands and the fold of skin at the back of the neck.  Oh and the intestines haven't gone inside like they should.

Oh.  Is that all???

A doctor came in that we had never met and told us we were probably looking at a chromosomal abnormality for there to be so many defects and issues.  He told us our fetus would likely be so delayed and deformed if it survived that we should consider our options for continuing the pregnancy.

First of all, our baby is not a fetus.  The person kicking me as we speak and the heartbeat we all just watched together means we've gone well beyond a medical term.  Secondly, my definition of a successful pregnancy is clearly different from this guy's so I made a crack about not caring if the baby becomes a doctor since they're overrated anyway.

We went in to this ultrasound appointment expecting to get some cute pictures for the scrapbook.  It's impossible to take in this much information with a toddler in the room who is getting restless and I need to go pee and I'd much rather talk to a doctor I trust.  We asked if we could stop the conversation and have the report sent to my obstetrician and take some time to talk this over as a family.

To continue reading: MaterniT21 test

To order "For the Grace of Joe" from MPower Books 

MaterniT21 test

January 4, 2013

We considered getting a second opinion.  Maybe go to Boston or to the Catholic hospital in town so maybe they wouldn't be so quick to offer an abortion. We have already been to the best facility in the state.  If we went to a less-equipped place, they would refer us right back to where we had gone already.  Boston would tell us the same thing.  We needed more information and despite our vow to never set foot in the hospital again - we went back.

There's a blood test they can do on me called MaterniT21.  It's only being performed by a lab in California and it takes two weeks to get the results.  It's intended to look for Trisomy 21 which is Downs Syndrome.  When the baby's blood cells break down, some of the dna material comes out in my blood.  They can also look for Trisomy 18 (Edwards Syndrome) and Trisomy 13 (Patau Syndrome).

According to the internet:

This test is most accurate at detecting T21 (Trisomy 21).  A little less accurate for T18 and less accurate for T13 but still about 92% accurate.

Babies with T18 are not expected to survive more than a week.  Babies with T13 are given about a year at best.  There is a range of severity with these conditions - partial, mosaic and full.  Some babies get all the markers for their condition.  I can't find an exact list for each diagnosis.  There are kids with full Trisomies that survive.  Some are partial and don't.

January 14, 2013

My obstetrician called me with the results from the MaterniT21 test.  Our baby has Trisomy 13.  The test doesn't indicate whether it's partial, mosaic or full.  But there is little doubt that the baby has T13 - Patau Syndrome.

I'm really wishing at this point that I had not bothered to talk to the genetic counsellor when I went in for the blood test.  I told her the information I had found online and I knew she had already told my OB that she suspected T13.  She advised me that to expect the baby to live past one year was very optimistic and that six months was more likely.  She also warned me that we probably would never take the baby home from the hospital if we made it to full term.  Insert that phrase after everything the doctors tell us 'if we make it to full term.'  In this lawyer-friendly society, they add that phrase after every sentence so that we won't get our hopes up and sue them if I have a miscarriage.

And here I was just hoping not to have the worst of the three diagnoses.

Too much information to process.

January 17, 2013

I went to see my OB and we had a long conversation about our options.  He is not afraid to just talk to me.  He doesn't warn me every other second that I might not go to term.  He has been researching the statistics and shows me a report that says a lot of the medical profession is of the opinion that these babies are not worth saving but that this attitude is not universally accepted because when there are interventions, there are success stories.

We discuss the options before us.  We have taken abortion off the table and it has now been labelled medical termination even though MY health is not in jeopardy.  Once we establish that my partner and my doctor and I are in this for as long as nature allows - we have two options.  Do nothing.  Or do something/everything in our power to keep this baby alive after delivery.

I walked out of the appointment with renewed hope.  The baby was kicking up a storm and my heart felt lighter.  We just needed more information to prepare for what lay ahead.

I asked for a full body, head to toe scan, no interruptions, no advice, just a full report on whether anything had changed from the 18-week ultrasound.  I wanted a dvd copy of the scan and I wanted pictures like they give you when your baby counts.

I also made an appointment with the only pediatric cardiologist in the state who does fetal heart ultrasound scans.  My biggest concern is the baby's heart.  Everything else seems to be irrelevant if the heart won't work so let's start from there.

January 25, 2013

From the internet:

There is also a condition called CPM - Confined Placental Mosaicism where the placenta has the chromosomal abnormality and the baby is fine.  There is a woman who found out at 20 weeks that her baby had enlarged kidneys.  The MaterniT21 test came back positive for Trisomy 13.  She had an amniocentesis that said her baby was fine. She was due to deliver a few weeks ago. 

That could happen to me right?  I could be that one in a million women who gets a positive result from this so-called foolproof test and it's just something wrong with my placenta.

February 1, 2013

The baby hasn't kicked me more than twice in two days.  That's what the doctors have told me to look for to determine how the baby is doing.

If there is a death in utero, the baby will not deliver spontaneously.  I will have to go see if there is a heartbeat at the doctor's office, then over to the hospital for an ultrasound to be sure there's no heartbeat and then labor would be induced.  Unless there is a normal, pregnancy-related cause for a C-section, I will have to deliver the baby like any other pregnancy.  We are already well beyond the point of bleeding and cramps.

On the way to the OB's office, I'm scheduling everything in my mind.  Okay, if I have to go get induced tonight, the person who will be taking care of my son is available and I'll probably be in the hospital all weekend.  I'll tell my professors what's going on and I might even finish out this semester at university.

Clearly, I was already numb from a month of counting kicks and monitoring movement and researching what could go wrong.  I had no pictures of the baby and everything was unknown except for a too-early ultrasound that showed most everything was wrong.

My OB found the heart beating just fine.  The heart rate was a little slower than it had been but it's still strong.  We're doing okay.  Just get through the weekend and go to the next couple of ultrasounds and see where we are.

In the meantime, I asked about CPM - Confined Placental Mosaicism.  He had never heard of it but guessed that the ultrasound in that lady's case hadn't indicated any problems and there was reason to doubt the MaterniT21 result.


Just wishful thinking I guess.

To continue reading Joe's story...