Some of you have heard this before, some have
heard bits and pieces through us or through the rumor mill, some have no clue
at all what this is about because even though the title of the blog gives it
away, you may have failed freshman year biology.
So here it is. Our secret. I am not sure I
even like using the word “secret”. Secrets are things you don’t want people to
know or are even possibly ashamed of. Mike and I are not ashamed. At all. And
we actually WANT people to know. We want to share our experience. We want you
to feel comfortable asking us questions or sharing your experiences. We tried
to tell as many people as possible in person, but frankly, there are too many
of you that we care about, so we figured a blog would be the best way to keep
everyone in our life informed with the facts so you don’t need to rely on
gossip or so there won’t be an elephant in the room next time we see you.
Which, by the way, how the heck did there get to be such a big elephant in the
room so quickly??
Mike and I are honest people so we will be
honest here, too. My thoughts will be in red so you can see what the heck we
were thinking.
It all started Wednesday December 10. We went
in for our 20 week ultrasound. I am impatient so we already knew the gender so
this was a pretty routine appointment for us. During the ultrasound I did not
notice anything in particular that the technician was focusing on. We then went
to meet with our doctor. She did tell us that the ventricles of the brain were
measuring larger than normal. Normal is considered under 10 mm, with an average
measurement being 6 mm. Our babies ventricles were measuring 12 mm. This diagnosis
is called ventriculomegaly. The measurement of 12 mm is not too alarming. Some
people are born with this measurement and that’s it. Some have it and are
developmentally delayed. So maybe it is something. Maybe it is not. She
referred us to a fetal specialist.
We went to the fetal specialist on Monday
December 15. Can I just have a side note that I HATE missing work. Anyways,
this ultrasound lasted about 45 minutes. The technician was just measuring
everything. Also, the baby was being uncooperative about showing her left foot
and the technician was getting frustrated. Uhhh, who the heck cares about her
foot? Aren’t we concerned about her brain?? We’ve seen her foot so we know it
is there…(It wasn’t until after the appointment I looked it up and a clubfoot
is a trait of some chromosomal disorders.) The technician left to get the
doctor. He came in and introduced himself and asked if we knew why we were
there. We had the usual, “uh-huh” and “yup” reply I am sure he gets all the
time. He did some more looking and measuring without really saying anything. He
was pretty quick. When he was done, he said, “Your bladder is pretty full, do
you need to use the restroom before I tell you everything?” I quickly replied
“Nope” because I am impatient but in that 2.3 seconds my mind was racing and
wondering what this “everything” was that he had to tell us. I saw on the
screen that the ventricles were enlarged so what more could he possibly tell
us?? I got off the table and sat next to Mike and the doc pulled up a chair and
a clipboard. He started drawing a picture of the brain to explain the
ventriculomegaly (yah...I still don’t know how to say this word, so I just say
enlarged ventricles). I’ll give y’all the Cliff’s Notes version. The ventricles
are enlarged and filled with spinal fluid. Generally the fluid will circulate
through the brain and spine. I felt I had a good understanding of this before
coming in. Then he said there is also a “flare up” in the heart. Again, he
said, maybe it is something, maybe it is nothing. I think the heart was too
small to get a real good look. I think we looked confused at this point because
he said something is showing up on the ultrasound but he can’t see what it is.
Just like when you have a calcium deposit on your finger nail. It is there, but
not really a concern. He said it could be like that. But the third thing that
was found was that the skin on the back of the neck was measuring thicker than
normal. Yah? And? My second toe is longer than my first. So what? Who cares
about skin thickness? Maybe a papercut won’t hurt as bad then. He then went on
to say the three scenarios separately would probably not be a big deal, but the
three of them combined probably mean Down syndrome. After this the geneticist
came in to explain our options. We could terminate our pregnancy. Ummmm...how
did I walk into this appointment with ‘it could be something, it could be
nothing’ to having a conversation about terminating a pregnancy?? Mike and I
both blurt out “NO” before she could even finish her sentence. Wow. I am glad
we were on the same page there. Or we could do nothing. We could get a slightly
invasive procedure called an amniocentesis to get a confirmation. The test is
100% accurate and there would be a long needle inserted and will take out about
2 TBS of amniotic fluid. The cells of the baby would be in there and they would
then look at the cell for chromosomal abnormalities. There is a risk of
miscarriage. Oh, and this test is covered by insurance. The next option would
be a less invasive test--a simple blood draw. Apparently in women carrying
children with Down syndrome, there are particular hormones that are extremely
elevated. This test has no risk of miscarriage, is only about 99.5% accurate,
and of course, is not covered by insurance. As Murphy’s Law is based off our
life, we opted for the slightly less accurate, less invasive, costly blood
test. The test results take 7-10 calendar days. Awesome. I can’t wait to get
test results on Christmas Eve. That was the end of the appointment. And now we
wait.
On Monday December 22 I was a nerd and went
into work even though it was Christmas Vacation. Probably within 3 minutes of
me sitting at my desk and turning on my computer, my phone rings. The phone
number is coming up as “Murray, UT”. Well, at least it isn’t Christmas Eve. I
answer and it is a different geneticist, saying the woman we spoke with last
week was off that day, but they wanted us to have the results. The results were
positive for Down syndrome. I asked again how accurate the test was and the
percentage of false positives--not because I was in denial but because I am a
math person and like numbers and statistics and actually teach a unit on it in
the spring. She again told me the test is about 99.5% accurate so although not
100%, with the findings of the ultrasound we can say it is 100% confirmed. The
next couple of minutes were a blur as I called Mike (and of course my principal
was walking in and out of my room numerous times because I needed a new
projector). Mike called his parents and I called Cathy. That is pretty much our
experience and story. From here on out, it was just telling people. We didn’t
really know how to tell people. I don’t think there is a Hallmark card. We
decided we wanted to tell as many people as possible in person, which wasn’t
easy considering it was Christmas. I was traveling. Other people were
traveling. Mike was working lots of doubles. So the next week and a half or so
was us telling people. So I am sorry if you did not hear from us in person.
Please don’t be offended if we didn’t tell you “right away”.
So for those of you who didn’t know, Down
syndrome is when there is an extra 21st chromosome (hence the title of the
blog). We figure since our baby has 47 chromosomes in each cell instead of 46,
there is just that much more of her to love!
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Here is some information we have learned. I
hope my English teacher friends appreciate!
In the US, it is Down syndrome. Capital D,
not possessive. In the UK, it is Down’s syndrome. Capital D, apostrophe s. I
don’t know why. Maybe the US decided to rebel and be different in the same way
that they invented a whole different unit of measure and didn’t want to use the
metric system.
Always list the child first. The emphasis
should not be on the diagnosis, so it is proper to say something like, “My
child with Down syndrome” or special needs or whatever. You are not supposed to
say, “My Down syndrome child”.
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Frequently Asked Questions:
How will this affect the remainder of your
pregnancy? Who knows! Everything is pretty much day to day. It hopefully should
be relatively normal. We will continue to meet with our regular OB/GYN. We will
meet frequently with the fetal specialist. He will just monitor the ventricles
to make sure they don’t get larger. Not sure what actions will be taken if they
do get larger. We meet with the cardiologist at the end of January when the
heart is bigger. Depending how everything goes with heart, etc. the only
differences we face is we may have to deliver at the U so we can be next to
Primary Children’s if the doctors expect there to be any difficulties. I may
have to get a C-section. Other than that, pretty normal. Just hoping I don’t
miss much work with all these dang appointments!
Are you expected to deliver early? Nope.
Well, I went a week early with Ali, so I may go early again. Mike is still
hoping for a May 4th delivery date so he can call the baby “Chewie”. (Yah, that
is a Star Wars reference...May the Fourth be with you…)
How the heck are you two holding it together?
I dunno. Because we have to? Don’t get me wrong, I have cried. Mostly about the
uncertainty of everything. I. Am. A. Planner. Sometimes when I tell people our
situation, I am totally fine, sometimes just cracking jokes, other times I just
break down. Happened just back east. I don’t know if I was making complete
sentences so I hope the Fitz’s are reading this to make sense of everything :)
Can
you do a test to see how "severe" it is? Nope. We really won't know
much until the baby is born. As of right now the ventriculomegaly is considered
mild, so I hope that is a good sign. We will monitor the ventricles throughout
the pregnancy to see if they get worse. Also, when they did the blood draw they
tested for a virus in my system, CMV (Cytomegalovirus). CMV is just a common cold virus so they were
surprised that I had not been exposed to it as a teacher. This virus is known
to cause birth defects. The same day that we got the negative result on this,
my mother in law Celia got a medicine journal in the mail and there was an
article about CMV and birth defects. I guess a lot of babies affected by it do
tend to have more medical problems. So, hopefully good news for us, but again,
we won't know anything until baby is born and she is or isn't meeting certain
milestones.
You really didn’t consider a termination?
Nope. I am pro-choice, but that choice is not for me. Last February when Mike
and I (and sometimes Ali) were discussing expanding our family we did not make
any conditions for the baby. That we would only have a baby on the condition
that it would go to Harvard...or that it be a professional athlete. We wanted a
baby unconditionally. And we plan to continue to love the baby unconditionally.
FUN FACT: The conversation of having another kid started during the 2014 Winter Olympics when NBC
profiled Canadian Skier Alex Bilodeau. I said we should have another kid
because I was so impressed with the love Alex and his brother had for each
other. His brother has cerebral palsy. So I guess I really tried to replicate
their relationship...
Don’t you think this will be a burden on your
marriage or on Ali? I think having any new baby is a “burden” in it’s own way.
Studies have actually shown that marriages that have a child with Down syndrome
have a lower divorce rate. So nanny-nanny-boo-boo, my marriage is better than
yours. Similar studies have shown that yes, a sibling with special needs can be
a “burden”, but the other siblings are actually better off. Again, a win! for
team Woodcock.
What do you want/need from us? I’ve gotten
this one the most. I usually respond that I need my dishwasher unloaded and my
floor mopped etc., and the typical response is a firm NO! Well. Fine then. All
we want and need is for you guys to continue to give us your love and support.
And if you have free time, you can do our laundry, too! :)
So that is it. Our whirlwind ride over the
last few weeks. Please feel free to ask or talk to us about anything. Our next
appointment is January 7th with the fetal specialist and we meet with the
cardiologist at the end of the month to see if the “flare up” is something of
concern.
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