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Heart Breaking Letter from a Mother
12 November 1998
Dear Vickie at Labor of Love:
There is so much to say that I do not know where to start. I am
writing to you in hopes of spreading the word to your readers. On
August 17, our beautiful daughter Amanda was born. About an hour later,
Amanda died. This is very difficult for me to write, but I feel, for
her sake as well as the possibility of preventing another family from
going through what we did, I must.
I have the best ObGyn in all the state, extremely cautious; mother
and baby always come first. I also was set to deliver at the best
hospital in the state. If there were any complications during delivery
for mother or baby, they had it all. We felt very at ease with
everything.
My due date was September 7, Labor Day. Late night on August 16th, my
water broke like a dam. It is important here to point out I have
absolutely no medical background and always trust the person in that
white jacket. This is a mistake I will live with the rest of my life.
The resident doctor on hand that night when we went in did an ultra
sound on me as a usual step in preparing for delivery. In scanning, she
came across a large image on the screen that was two long parallel lines. She commented on the fact that I had a "lot of chord". I questioned
what I also saw by saying it didn't look like chord. That was the end
of that conversation. I didn't pursue my question; never for a second
thinking there could be something growing inside me or on my baby. My
thought was that she's the doctor and she knows everything. Well, she
didn't. Apparently residents are not trained to fully read an
ultrasound image. Their job is to check and make sure the head is in
the right position and to check for fluid. She should have listened to
my concern and at least called in a second opinion. As I put her up on
that pedestal for wearing the white jacket, she too was in error for not
listening to me, as I was only the patient.
Even with this, however, there are no hard feeling toward her. In
fact, I really feel sorry for her and feel she will never let ego get in
the way of her job again.
That was probably the last chance Amanda had for life. What was missed
on that ultrasound was a benign tumor, a sacrococcygeal teratoma.
My labor was quick and easy until what was thought to be my last
push was not. The tumor, a sacrococcygeal teratoma, was on her rump and
was about 10x9x9 centimeters, roughly the size of her head. Still not
knowing why she was stuck, I pushed they pulled . She was caught up by
this growth for less than 5 minutes.
Because sacrococcygeal teratomas are so rare, they are not
specifically looked for on any ultrasounds. I did have an amniocentesis
test, along with an extremely thorough ultrasound at 17 weeks. And in
going back over those tapes, the tumor had not even begun to grow.
When she got stuck, she was too far out to do a cesarean section.
When she was delivered, she had been so traumatized that her Apgar
ratings were very poor: 1 and then 2. It is thought that the tumor must
have torn slightly during delivery, and this caused her weak condition.
As they tried to move her, the tumor tore larger. They worked
extensively for over an hour trying to save our Amanda. Since they
could not stop or control the bleeding from the approximate 5x2
centimeter tear their efforts were in vain.
This is what we now know about this tumor called sacrococcygeal
teratoma: They are very rare, about one in 40,000 live births. They
are more commonly seen in females. They can grow very large but are
usually benign. Ultrasonography in the second and third trimester is
very important in its management. It is recommended any fetus with
lesions larger than five centimeters be delivered by cesarean section to
avoid a traumatic delivery. In most cases where the baby is delivered
vaginally, they die. This type of tumor is very fast growing, although
no one knows why they occur. Doctors do not look for this, as it is so
unlikely to happen to you. Insurance companies pressure the doctors not
to do ultrasounds, as they are too costly. Doctors are not gods; they
do not know it all, and we need to exercise our right to question them.
There is nothing like a mother’s instinct.
I hope you can pass this on to your readers somehow.
Sincerely,
iliaina@cchono.com |
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