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I had anxiously
awaited my first pregnancy and I suppose the term "baby-fever"
was accurate in my case. The getting pregnant part was so
easy it made me nervous. Then, to discover that my baby
was babies, well, that was like hitting the lottery! I had
dreamed of having two boys since I was old enough to care
about having children, and not only was I getting them,
but they were identical twins. Needless to say, I was on
cloud nine! Unfortunately, however, my euphoria only lasted
a few short weeks.
In February, 2002,
at 22 weeks, my babies and I were diagnosed with twin to
twin transfusion syndrome (TTTS). TTTS is a disease of the
placenta shared by identical twins, causing disproportionate
blood flow from one baby to the other. My donor baby was
shrink-wrapped in his amniotic sac with virtually no fluid
and no apparent bladder. He was "stuck" and could
not move due to the lack of fluid. There was polyhydramnios
in the recipient baby who's heart was pumping overtime to
process the excessive blood flow he was receiving. I was
sent to a perinatologist who performed two unsuccessful
amnio-reductions in an
attempt to correct the inequity. I will never forget his
words when he said that if I were his wife or his daughter,
he would encourage me to terminate my pregnancy and try
again. On Valentine's day my OB/GYN phoned me at work to
ask "is your family prepared to raise severely handicapped
children?" My answer was "No", but in my
heart I did not believe that those were our only options.
My husband Zack
and I were determined to take matters into our own hands
and learn as much as we could, understanding that time was
of the essence. If our babies didn't live, it would be because
we tried everything and failed, not because we gave up.
Our family and friends began a research campaign and within
a day or two I was speaking with Mary at the TTTS Foundation.
I think we talked for almost an hour. She asked me questions,
helped me to know what questions to ask during our
second and third opinion visits, provided us with an invaluable
book of information, and most importantly, she understood
how we felt because she had been there too.
Simultaneously,
we e-mailed Dr. Julian De Lia at St. Joseph's in Milwaukee.
He pioneered the placental surgery to correct the problem
and has dedicated his career to this rare but devastating
disease. He phoned us that same day and spent about an hour
learning about us and explaining his procedure. He suggested
that I immediately begin drinking Boost to supplement my
protein intake (it was discovered prior to surgery that
I was protiennemic and anemic) and that I go on bed rest.
Zack became the "pregnancy police" to insure that
I followed doctor's orders. What stands out in my memory
is Dr. De Lia's relaxed nature and clear concern for me
and my family. After several visits with our new perinatologist,
who worked together with Dr. De Lia, we
found ourselves on an airplane headed to Milwaukee. While
this may seem to some as the most frightening point, Dr.
De Lia and the staff at St. Joseph's made us feel loved,
and sometimes that's the most important thing a doctor or
nurse can do.
At 24 weeks pregnant,
after a big kiss from Zack, I was wheeled into the operating
room. Waiting for me there was a team of men and women wearing
space goggles and funny booties. But even behind his Darth
Vader sunglasses, Dr. De Lia made me feel safe and gave
me a reassuring pat with his big warm hands. It was then
that I knew he was an angel without wings.
A few hours later,
while I was recovering, he reported back to Zack and my
mother-in-law that the surgery was successful and everything
looked great. He showed us a video of the actual surgery
and we were lucky enough to see our baby boys, Dax and Deacon
in-utero. A day or two later we had an ultrasound in which,
for the first time, we saw Deacon's bladder fill with fluid
and shortly thereafter, he rolled over for the first time.
Dax's heart was no longer working overtime and the fluid
levels between the two were evening out. Zack and I cried
tears of joy.
On June 4, 2002,
at 36 weeks, at 2:10 p.m. my boys were lovingly greeted
into this world. Just over four pounds each, they were slightly
jaundiced, but otherwise perfect. Today, they are sixteen
months old and as smart and active as two boys could be.
It is a joy watching their special twin bond develop, a
joy which we do not take for granted.
Dr. De Lia has
become a member of our family and we keep in touch regularly.
Just a week ago, while in Los Angeles for a lecture at Cedars-Sinai,
Dr. De Lia, his wife and son, my family and another TTTS
family who I have bonded with through this experience, all
joined together to celebrate the miracles of modern medicine,
Dr. De Lia, and the power of faith.
To the first doctors
who said just give up.....Well, I sent them a very nice
birth announcement which read "Two Miracles in One
Minute". Enough said.
Tasha and Zack
, parents of Deacon and Dax.
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