How My Doctor Made It Worse...
"Do not apply a cookie cutter approach to your treatment
of ANY pregnancy -- especially important when dealing with
a tricky, vile condition such as TTTS. Do not dismiss a
mother's concerns of the advancing severity of TTTS with
comments like: there's no need to worry about fluid imbalance
between the two babies; or discrepancy in size is common
in twin pregnancies. Do not use the same ultrasound protocol
you'd use in so-called normal pregnancies or singleton pregnancies.
Do not think that two weeks between scans is remotely sufficient.
Do not blame oversights in medical care on the unpredictability
of the condition. Do not reply to patient questions with
rote answers instead of giving each question critical thought
and individualizing your response to each unique situation.
Do not let ego, hospital bureaucracy and politics or intellectual
sloth delay or prevent a patient from getting specialized
treatment elsewhere. Do not waste time until the condition
is severe before making treatment plans. Do not allow a
wait-and-see attitude replace playing it safe. Help patients
get information instead of making them do all the legwork.
Make time to review any research the patient takes the pains
to uncover."
Wynne, Mother of twins, one passed away, Massachusetts
How My Doctor Made
It Worse...
"I did not like it when my doctor did not diagnose
my TTTS, acted like it could not happen so early in my pregnancy,
did not maintain adequate ultrasounds of my survivor, did
not warn me of the risks of twin pregnancies, treated the
loss of my baby as a miscarriage and like it was not 'his
problem', didn't organize support after the loss of my baby,
and he was not up to date with current information on treatments
for TTTS"
Kylie, Mother of twins, one baby passed away, Australia
How My Doctor Made
It Worse...
I did not like it when --
1) My doctor
chose to not inform me about TTTS out of a desire to not
"Scare" me.
2) My doctor
did not respect my intelligence enough to help and allow
me to make
informed choices about my care.
3) My doctor
did not inform me of what a Perinatologist was or refer
me to one after I
was diagnosed with Monochorionic/Diamnionic Twins.
4) My doctor
did not aggressively treat my severe anemia and told me
to "do the
best I could" taking prenatal vitamins I was allergic
to instead of prescribing a
different vitamin or telling me to try drinking 3 or 4 cans
of Ensure a day in order
to help boost my nutrition.
5) My doctor
allowed me to go from 21 to 28 weeks without an ultrasound,
knowing
I had Monochorionic/Diamnionic Twins.
6) My doctor
diagnosed pre-term labor and treated me with Terbutaline
and
Betamethasone approximately 4-5 days before my baby died
without doing a
Biophysical profile.
7) My doctor
allowed me to be discharged from the hospital without getting
at least
a final, accurate heartbeat on both babies, let alone an
ultrasound after being
monitored for @ 7 hours for preterm labor without one. The
last documented
heartbeats were observed 4 hours before discharge.
8) My doctor
did not tell me there was a Perinatologist available for
"hands on"
consult the entire 4 weeks I spent in the hospital on bedrest
after one of my
babies died.
9) My post
20 week, stillborn child, cannot be recognized by either
a Birth or Death
certificate, only a Fetal Death Report. I do not like it
that ACOG has come out
against legislation attempting to change this.
Cheryl, Mother of twins, one passed away, Virginia
How My Doctor Made
It Worse...
"I think it's so important to listen to women when
there are concerns. In my case, it might have helped to
save our son. I "knew" that something wasn't quite
right. When I voiced this concern, I was reassured with
words, not with testing that would have shown that Aaron
was indeed in distress. A week later, at my routine ultrasound,
he was gone. I have regret for not being more vocal. Do
not withhold or downplay important information. Be honest,
sincere, and sensitive."
Lauren, Mother of twins, one baby passed away, Massachusetts
How My Doctor Made
It Worse...
"I did not like it when my doctor told us, 'There is
nothing that can be done.' I deserved the right to 'try'
and save my babies. I was given only one option, deprived
of knowing about the others, and was told that none of them
worked. I have to live the rest of my life with my loss,
I certainly deserved the right to have had a life with both
of my babies. After the diagnosis, I was in such a state
of shock that I became emotionally paralyzed. I needed my
doctor to tell me they could make it and we would fight
for them. I wanted to grab a hold of anything. I would have
given my life to save my son. Please just give us the chance
to try. They are our children. It is our life. We only get
one chance and mine was stolen from me. I do not think it
is asking too much to have the 'chance' to try. Give me
the options and do it in an unbiased way. Leave out the
'I don't think it works' part and let me make that decision."
Mary, Mother of twins, one baby passed away, Ohio
How My Doctor Made
It Worse...
"After my first daughter passed away, I soon ruptured
with Tory. The resident on call did the
ultrasound herself and said that she saw the second sac ruptured.
She then cheerfully asked if we
wanted to know the sex of that baby. This was not a time
to be cheerful, especially after my first daughter had already
passed away. I already knew they were girls, but she must
not have read my chart! I was disappointed that I did not
receive a card or something after both my girls passed away
from the practice. The NICU doctor sent a lovely, simple
vase of flowers and a card, and came to the funeral. After
my delivery, I stayed up until 6 am with my daughters telling
them I love them. A doctor from the practice, who did not
know me, walked into my room and was very cold and condescending.
The pain medications I was taking were not working and I
couldn't
sleep, as the pain kept waking me up. I mentioned this to
him and he said,
Low pain threshold, huh?" (imagine the snide tone).
This comment, combined with my sorrow and pain was too much
to bare. He never offered his sympathy."
Amy, Mother of twins, both passed away, California
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