I found out that I was pregnant
and at my 20 week ultrasound I learned that my baby
had an array of problems the largest one being a bladder
outlet obstruction which lead to my daughter having
no amniotic fluid. I had an amniocentesis (they
drained over 1/2 liter of fluid) performed along
with many ultrasounds in the span of afew days.
The doctor was negative the
entire time, constantly suggesting abortion (what he
called 'termination') and telling me of others
in my situation that had abortions. I asked him
what he would do in my situation, and he said he would
terminate. I asked about surgery, and he said the bladder
was too large for him to even consider it. I asked about
early delivery, and he said that it was a possibility
but that if I were to do it doctors would not prepare
to help my baby.
One visit he suggested/offered
a second opinion. My new doctor agreed that survival
was not likely but offered to do more tests because
a surgery was possible with normal chromosomes; more
fluid was drawn, however this time there was also a
mass of fluid in the abdomen as well. They
decided that another fluid draw would be needed when
I went to the appointment they sent my partner and I
to a private room. Bad news...it was a girl, and the
surgery was not used on females. They explained
'comfort care,' which is how to care for your
child if it will only live a few minutes.
I began to have weekly ultrasounds
at 25 weeks, and we noticed a small amount of
fluid. The next week the amount of fluid was normal.
The situation was more hopeful, but she had missed time
for critical lung development. Throughout her
ultrasounds we were told many things. She had clubbed
feet; she was probably retarded (provenwrong by chromosome
test); there was fluid around her heart; she wouldn't
be able to breathe; her kidneys would fail.
They were wrong. She was
born 5 weeks early at five pounds. When I had
her, I looked down and heard her cry. I remember
asking myself, "is this supposed to happen?" (I
had never seen a baby die). She was alive!
I tried to watch through her team of doctors.
They even let me hold her for a quick picture. We
were in the NICU for three weeks.
She does have many medical issues,
but her lungs are normal. Her kidneys have some issues
but should not need replaced. Her feet are not clubbed, she
is not mentally retarded, and there is no longer fluid
in her abdomen or around her heart. Her medical
problems are mostly related to her large bladder and
prune belly syndrome (a lack of abdominal muscles) but
are not life threatening. She has had one surgery to
help prevent bladder infections She is eight months
old and very happy. She can sit up on her own and roll
over. She is amazing, and I am so glad that I
I hope this story can help someone.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.