I feel like today’s
theme, today’s gift, is a great follow up to yesterday. It’s a similar theme in that it speaks of the
desire I was immediately drawn to in giving back to Mt. Sinai and for helping
other families. Today I am expanding on
this in the area of helping others but more over in helping change the way
things were being done in the area of proper care in twin pregnancy as well as
care and treatment for TTTS and in the
way support was delivered in the TTTS ‘world’.
The current standard of many of these things was totally unacceptable to
me in some areas and the more I learned about how things were done, the more
people I met, the more stories I heard the more I wanted to be part of the
change that needed to be happen.
One of the first things I
began to see happening was the way that families who had suffered a loss were
treated in some of the groups I belonged to.
Initially in my journey, likely for the first year or so, I didn’t
notice any differences in the way I was treated in groups intended for the
support of all TTTS families. Maybe I
wore blinders or maybe it just was a much smaller community. I did feel that, although the support came
mostly from others who had also suffered a loss and/or members of the TTTS
community and not, almost ever, from the person who ran this one particular
support group (which I did find odd since this person did suffer a loss and yet
never responded to any of my emails after my first one and never did send the grief
package that was promised) that I was welcome.
But as I said, this began
to change as time went on and likely it was because more and more survivors
were being born and slightly less loss was happening. The communities grew as facebook expanded and
so we were seeing more and more stories of survivors. I felt like an oddity, giving support to
those going through TTTS, offering hope, when I didn’t have a perfect success
story. It seemed like there were very
few loss families who did what I did. Looking
back now I think it wasn’t so much that loss families wanted to put it behind
them but rather that it was too painful to relive time and time again as you
offered support. I guess that, in
itself, is a gift…the ability to step outside your comfort zone, step past your
grief, and offer hope. I think I began
to be more sensitive, more aware of how the words that some thought were full
of hope could actually hurt people who were experiencing loss when my journey
was about 2 years old. Comments like ‘My
babies were fighters’, ‘I prayed and God saved my babies’ and maybe one of the worst ‘My babies proved
your statistic wrong’ (or something to that effect)etc began to eat at me. My babies had both been fighters. I had prayed.
Sometimes double survival just wasn’t what happened for everyone and
that didn’t make anyone… the babies, the moms and dads, the people who prayed
etc anymore or any less important. I
know that those with two survivors would argue this point with me, and since I
have only my perspective to go on, it may be very valuable arguments but it is
what I know. I know that some of them spoke of feeling ‘survivors guilt’ and
felt loss parents made them feel bad for having survivors…so every side has a
story to tell.
I tried to share my feelings
and was shut down constantly. I was told
that only positive stories should be shared in order to give hope. If I posted pictures of anything related to
my loss then were quickly hidden. It
became very apparent to me that a much more welcoming group was needed. And so I started one and it amazes me
daily. It has 900+ members and is much
more active than any other TTTS support group.
And it was a good thing I began this group because eventually my
outspokenness combined with some things I was open about regarding how some
support foundations were run got me banned from another group and I could no
longer offer the support there that I felt drawn to do.
But that was ok because
this group that I had begun was such a place of strength, of hope, of help, of
honesty. Other groups offered hopeful
words and positive messages but they seemed to accept that all doctors who
treated TTTS were created equally and I was quickly learning this was not true,
not at all. I began to research
statistics for various surgeons and soon became very involved in a group that
promoted, strongly, treatment by what was labelled as ‘Top Tier TTTS specialists’. I helped moms, via Fetal Health, to get
second opinions and even switched into the care of a better doctor. I helped moms and dads, via Fetal Health, to
pay for the travel costs to go and see these specialists. And with this team of friends I had acquired
worked (and still do) to educate the ‘expecting twins’ communities to learn
what tests they needed, how often they needed to be seen, who they needed to
see etc. I learned about the falsehood
of ‘Acute TTTS’ which was believed to be something that only happened at
delivery and resulted in a baby with too much blood and one with too little…a
red baby and a pale baby. This diagnosis
was believed to exist because these moms had never shown signs of fluid
imbalances or size differences. What I
began learning was that this condition existed weeks prior to delivery and was
called TAPS. It didn’t have a lot of
treatment available to it but monitoring and early delivery prevented losses to
it.
I soon became involved in
campaigns to educate expectant moms about it and as well, believe it or not,
doctors about how often those pregnant with mono di twins need to be seen and
need to have ultrasounds…and what needs to be checked in those
ultrasounds. The status quo wasn’t
acceptable. Being seen every 4-6 weeks
for ultrasounds, as I was, was not acceptable.
If the timing of my ultrasound had not happened as it did then both my
babies would be dead. I was just not
being scanned enough to watch for TTTS or TAPS.
Being seen less after 24 weeks is not acceptable…. TTTS can happen right
up until the cords are cut and it could care less how skilled or knowledgeable
a doctor is. Being told nothing can be
done because your babies have an anterior placenta is unacceptable. Doctors who say this infuriate me. I had an anterior placenta and have
discovered that, although it makes it slightly more complicated, skilled
doctors have been doing laser on anterior placentas for 10-15 years. Doctors who say the only thing that can be
done now, or let’s try this for now, is an amnioreduction (where they drain off
the excess fluid from the recipient) are unacceptable…and dangerous! TTTS laser surgery can often not be performed
after a reduction is done.
Change in support, change
in awareness, change in education, change in understanding and most of all,
change in empathy levels NEEDED to happen and the desire to see it happen, the
motivation to make it happen, is an amazing gift to be given. I am so very
thankful to have been blessed with this gift and even more blessed with the
friends, foundations and professionals who can help me to gain the knowledge
and confidence to see it to fruition.
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