At 23 weeks it was discovered that our
identical twins were suffering from
Twin to Twin Transfusion Syndrome.
Baby A was our recipient and seemed
more affected than baby B...he had
tons of fluid, a full bladder and some
flow issues in his cord. Baby B had
no visible bladder and appeared to be
stuck but all seemed well with him.
It had only been occurring for a few
days to a week at best.
I was sent to Toronto and it was
determined that we were at Stage 3 of
the disease and baby A's (now named
Cole...finally we knew the sex of our
babes as of our arrival in Toronto)
heart was beginning to show the
affects of extra fluid. His largest
pocket was 8 the day before and was
now 10. Cameron, our donor twin,
still had no fluid and still looked
good.
Laser surgery happened later that day
and at this point the TTTS was now at
stage 4...fluid had built up in Cole's
abdomen and he was very ill. All of
the vessels (14 in all) were ablated
during surgery and everything seemed
fine. We were warned that Cole was
very sick and were sent for a fetal
echo cardiogram the next day.
We were devastated to learn that he
had passed away. It was so very
difficult to grasp, to grieve, to
carry on.
Cameron was doing ok but was now
anemic and needed a blood
transfusion...done in utero. A week
later all seemed well with him and I
geared up for a high risk pregnancy
with bedrest at home.
Three weeks later I rolled over in bed
and felt like I'd peed. I checked and
the fluid was brown tinged. We went
to the hospital but no further leaking
happened so we were sent back home.
As soon as I rolled over in bed again
it happened again.
I was rushed by ambulance to a
hospital with a NICU. I never had any
signs of labour at all...thank
goodness. The gushing stopped 2 days
later and I hoped I was resealing
though my doc didn't figure that would
happen as the rupture was most likely
from the laser surgery site.
I moved hospitals to be closer to home
12 days later and began to leak a lot
again but still no labour. I had
daily NST's and 2-3 times weekly
ultrasounds. A few times I would have
some contractions but nothing too
worrisome. I had blood tinged fluid
loss and Cameron's heartrate was
elevated a few times...but again no
labour.
On Feb.26th we welcomed our sons into
the world...one into our hands and one
into God's. Cameron needed no vent
support, only free flow oxygen. He
was also IUGR and dropped of below the
1st percentile for weight until he was
about 8 weeks corrected. He's now, at
13 weeks corrected, above the 10th
percentile. He had a slight heart
murmur and has contractures from the
lack of fluid. We see a dietician and
physio on a regular basis.
I am so very sad about the loss of
Cole but also know that Cameron is
such a miracle. I can only hope that
someday, the other side of heaven's
gates, that it will all finally make
sense.
Please feel free to contact me if you
read this story and want support or to
share yours.
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