Saturday, February 9, 2013

We can't do this alone

February 5, 2013

9:30 am

The report from the December ultrasound said our baby had (from head to toe) extra space around the brain, cleft palate, small jaw, thickening of the nuchal fold, polydactyly of one upper extremity (extra finger), a heart defect, bright kidneys (told this meant they were not functioning or had calcified), omphalocele (intestines herniated into the umbilical cord) and rocker bottom feet.  Even though the scan was only 20 minutes instead of the normal 45, the report said the baby's stomach wasn't filling and emptying which meant the baby wasn't swallowing amniotic fluid as should be expected.

What I knew going into this scan was the difference between 6 mm and 6.4 mm is very small so the nuchal fold wasn't THAT big and it was just a measurement on a moving baby that was only 18 weeks along.  Plus the baby was laying prone (on the belly) the whole time. The cleft palate and omphalocele are very fixable.  Babies only learn to swallow at around 23 weeks so to expect it five weeks prior was ridiculous.

The ultrasound technician this time around was wonderful.  She said the kidneys were still showing up a little large but no longer bright.  The baby was swallowing and the kidneys were functioning.  The growth had been right on target at the prior scan and gave me the exact due date we expected.  The current scan showed the baby was growing at around the 20th percentile.  That's the exact opposite of my first baby who was consistently at the 80th percentile or higher.  Essentially, most babies grow at around the 50th percentile or average growth.  My giant firstborn son grew way faster and bigger.  This child is growing slower and smaller.

Instead of noting the improvement in the kidneys - the report that went out to my OB said no changes from prior scan.  On the other hand, there was no heightened concern about the slow growth.  The fact that the baby had learned to swallow meant very little.  To us, it means the kidneys and dialysis are sliding off the list of things we need to worry about.  Swallowing which greatly improves the baby's chance of EATING after being born is also of less concern.

We got some great pictures.  We mistakenly asked for 3D pictures.  At 24 weeks, babies who are developing perfectly look like birds.  That was not the way to ease our minds.  But the rest of the ultrasound was encouraging. 

12:15 pm

I arrive at the pediatric cardiologist's office.  I'm ushered into a room right away.

1:15 pm

Doctor enters and apologizes for having me sit there with no television or magazines like the cozy waiting room offered.  No big deal.  It's not like I have much on my mind.  An hour of silence was just what I needed to get me closer to full on psychosis.  My partner was in the car with our sleeping, teething toddler.

I tell the doctor he can make it up to me by giving me a perfectly formed 24 week baby heart report.

He warns me that he doesn't talk during the scan but will tell me when he's finished what he sees.

He's brought a sheet of paper like you would give a kid to color.  It's got a picture of a newborn baby drawn on there and a dumbed-down version of a heart.  He draws on it while he talks.

The baby has a left superior vena cava.  No big deal.  Lots of people have those he tells me.  It just drains into the heart and blood flow carries on as normal.  The chambers are all perfect.  The valves are all perfect.  The septum that separates the heart which I'm expecting to be the problem is perfect.  The aorta however is measuring a little small.

While I'm still pregnant and the baby doesn't need to get oxygen through the lungs, it's not a big deal.  After birth, they will take the baby, do an echocardiogram and determine if there is in fact a coarctation.  If there is, the pressure will increase on the aorta and the weak spot will begin to pinch off and eventually stop supplying oxygen to the stomach, lungs and brain.  There's a tube type area that can alleviate the pressure but the medication that helps this happen causes babies to forget to breathe.  Given that my baby will likely forget to breathe anyway (doctor's words not mine) this medication is not recommended.

There is a surgery that will correct the coarctation.   They go in through the baby's ribs and snip the pinchy part of the aorta and stitch it up.  (Sorry for the technical jargon).  It's invasive and takes a long time to heal but will essentially fix the problem permanently.

Okay, so we're out of the woods.

"...but I don't advise you to have this surgery on your baby..."

I had read about families who met doctors who advised against life-sustaining surgery.  I really didn't expect to meet any of them.

I must have appeared to not understand so he gave me an analogy.

Imagine you had bought a house.  You get in there and it has numerous problems but you figure you can get them fixed.  One guy will tell you oh I can take care of the asbestos.  Another guy will assure you he can fix the plumbing.  Someone else will tell you not to worry about the electrical.  But at the end of the day, the house is not worth it.  In other words, between the omphalocele and the cleft palate and the developmental delays this baby will undoubtedly have, well, you know.

I sat there dumbstruck for a minute and replied "I don't think you can compare the value of a rundown house to a baby's life.  If anything, that story only reflects how little value the doctors in Maine place on a child with special needs."

So then he arrived at the real reason for his recommendation to not get this surgery.  In his experience, the surgeons capable of doing the procedure will not touch a baby with Trisomy 13. 

There is a possibility of having a stent inserted into the problem area.  It could help for hours, days, weeks even years.  If we have the real surgery, the baby may not be accessible and we could be deprived of the time we would have had if we had opted for the bandaid solution.

So do we find a hospital willing to do the surgery?  Should I move to North Carolina where my partner's family lives and to a place they nicknamed the research triangle?  Maybe they would be happy to take a chance on a child if it might increase their 'miracles worked' numbers.  Maybe I could move back to Canada and find a hospital that will work on a child with a T13 diagnosis.

I have four more months of pregnancy to find a solution.  My baby is one pound, two ounces right now.  How accurate is the measurement of the aorta?  What if the doctor is wrong about the diagnosis?

It's all bargaining.  And it means a hell of a lot of work rewriting the book on Trisomy 13 in Maine.

We went home and watched our ultrasound video and imagined what it would be like to hold the baby's hand even for a minute.

February 6, 2013

I went to see my obstetrician.  The report he got from the head toe scan said no changes although I am still pregnant (which I'm taking as a good sign) and the baby is kicking constantly (with this diagnosis, they are not supposed to be active).  The baby is swallowing and the kidneys appear to be working.  But officially, no changes.

My two-year-old is working on four molars and is screaming on my shoulder while I talk to the doctor.

I show the piece of paper with the heart picture on it and explain what was told to me as best as I can recollect.

So is it true?  In your time at the hospital have you seen or heard of heart surgery on a child with Trisomy 13.

In his ever-diplomatic way, my OB said he wasn't aware of a refusal to do surgery so much as a lack of opportunity.  There just haven't been any T13 or T18 babies to do the surgery on.  Most either don't make it because of miscarriage or due to medical termination.

He's been at the same hospital for more than 25 years.

February 8, 2013

I decided to write about what's going on in my life.

This past month and a half I've dropped by hell more than once.  We tried telling a small circle of people.  We tried telling a bigger circle of people.  We tried putting it on Facebook.  There are success stories but there are also staggering statistics and attitudes in the medical profession that insist our baby isn't worth saving.

We can't do this alone.  I mean we literally cannot do this alone.  We live in a state where there are no other cases of children who survive (at least that's what we've been told so far).  Our local hospital is one of the best hospitals in New England and we have already been advised that there are no surgeons who will touch one of the surgeries we might need given the diagnosis we've received.

We need information.  We need connections.  We need to talk to other families who know what we are going through.  

For a while this became a discussion about abortion.  It became a religious discussion.  It became about children with special needs.  Maybe in twenty or thirty years I will have the energy to enter into those debates and discussions.

We have very little time to gather all the information we need to take care of our baby.  We are choosing to give this baby every opportunity to live but are hitting roadblocks in providing those opportunities and are faced with the very real possibility that we may never see our child take a breath.

All I know is that today, I am pregnant.  My baby is kicking and has a strong heartbeat.  We could use a little help getting through tomorrow.


Mary robbins-sibouih said...

vickie--support. please let us know how we can help. we are here for you.

Jackie said...

I love you cuz..what else can I say..just LOVE

Anonymous said...

Oh V I had no idea until I just now read all this. I hope you get info, support, compassion, solidarity and all good and needed things. My mom's an ultrasound tech in MI; I'll ask her if she knows anything and let you know if yes. Give J my best and H a hug. Lisa

gerry phelan said...

My thoughts and prayers are with all of you. Be strong!

Lisa Bob said...

Vickie, God must think you and Joshua are very strong to go through all this waiting and uncertainty. The doctors are only human and just don't know what to tell you so keep following your heart and trust your own instincts. We love your baby already and please know that you're always in our thoughts and prayers.

Unknown said...

Vickie, thank you for sharing your journey. All of you are in my thoughts and prayers--you, Josh, Henry, and your dear baby.

Unknown said...

Vickie, thank you for sharing your story. Love, prayers, and positive energy for all of you-- you, Josh, Henry, and your dear baby.

Raluca said...

My name is Raluca, i am from Romania and our little girl Cati is 21 months old with full T13. Although T13 kids are more rare than T18 babies, if they survive, they tend to do a little bit better in terms of development. There are also a few things you can do of your precious baby boy makes it, like start a neurodevelopmental program with him. Cati is the light and joy of our home, loved by all who know her. She is like a 7-10 months old baby in development, which is very good for a T13 baby at this age, and she is right now fighting chicken pox :) Not all babies survive, that is true, but there is always hope and hope goes beyond everything, hope goes even beyond the end.