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How My Doctor Made it Better...
"I liked it when my doctor treated me like an intelligent
person who had just suffered the death of her three children.
I liked it when my doctor gave me options for my babies'
birth, then let me decide. I liked it when my doctor respected
my opinions and wishes. I liked it when my doctor didn't
try to treat my experience like it didn't happen or wasn't
important, and when he didn't try to 'pass the buck'. I
liked it when my doctor called my sons by their names. I
liked it when my
doctor came to my babies' funeral"
Mom of quadruplets, three passed away, Australia
How My Doctor Made it Better...
"I liked it when my doctor:
1) Treated me like a person, not a problem.
2) Respected my right to information
about my condition, and ALL available options
for treatment.
3) Did not assume that because his practice
had not personally care for a mom whose twin passed away
in-utero from TTTS before, it isn't likely to happen.
4) Did not treat me like property he
did not wish to "share" with physicians outside
their practice.
5) Respected and conscientiously reviewed
new information I brought in regarding
my condition.
6) Did not take personally, or be annoyed
by, vigorous questioning.
7) Understand that he is the EMPLOYEE
of the patient, who is paying them to
inform and treat the condition, not to make decisions for
them unless
specifically given permission to."
Cheryl, Mother of Twins, one passed away, Virginia
How My Doctor Made it Better...
"I liked it when my doctor took the time to meet with
my husband and I in his office after each appointment. There
were days when I was scheduled for ultrasounds, NST's, and
check-ups which took hours. I was not allowed to leave until
I met with him afterwards and discussed his findings for
that day. Not having to wait until the next appointment
for findings relieved an incredible amount of stress and
worry. Anyone that has been diagnosed with TTTS can tell
you that the mental stress is almost unbearable. Knowing
I had an honest and caring doctor who would update me, good
or bad, at every meeting helped me trust his judgment and
relieved stress.
Another thing I liked about my doctor
was that he was accessible. I had his pager number, phone
number, fax, and e-mail address. At every appointment he
reiterated that if I felt like something was wrong, not
to hesitate to page him, even when he was on leave. If I
had a general question that did not need to be answered
right away, I could e-mail him and he would generally get
back to me within 3 days. I really thought that was smart
because that freed up his phone time for more important
calls. It was also less frustrating for me. At each appointment
I had to absorb so much new information. It never failed,
I always forgot to ask something. Meanwhile, my doctor had
an incredibly large amount of complicated pregnancies to
deal and probably didn't need me to call him every five
minutes with new questions. I feel that e-mail eliminated
a lot of frustration on both ends and really allowed my
doctor to stay involved and available, without being annoyed.
There was an occasion that I just showed
up at clinic without an appointment because I could not
feel Baby B kick. It turned out that my doctor did not even
have clinic that day. I happened to pass him in the hall.
As soon as he saw me, he asked what was wrong. He immediately
stopped what he was doing and performed and ultrasound on
me himself. I will never forget his expression "Thank
God Baby B has a heart beat." I believe that he was
sincerely as relieved as I was. Afterwards we went into
his office, and had another discussion of what was going
on. The first words out his mouth were "You did the
right thing by coming here." I think doctors sometimes
forget what kind of image people hold of them. If my doctor
would not have taken the time to make me feel truly comfortable
with him, I may have been too scared or thought that I was
being too much of an inconvenience to go in and have my
babies checked out. I currently am
Helping two local mothers that have either been diagnosed
or waiting for their next ultrasound to find out if they
will be diagnosed with TTTS. Both are also hesitant to voice
their concerns. Luckily for them they are now both under
the care of the same doctor I had. I believe that because
of our doctor's direct yet caring and available attitude,
these women will not be afraid to seek the attention and
knowledge that they need to get through their pregnancies.
My doctor told me if there was any more
information or options of treatment that I found on my own,
I should share it with him. After I received the educational
package for parents from Mary Slaman-Forsythe, Founder and
President of the TTTS Foundation and a mother who had TTTS,
I requested that she send a package to him as well. I know
he was very impressed with the book and the Foundations
knowledge. He now gives all his patients booklets from the
Foundation. I hope you will acknowledge the Foundation's
findings and research as well."
Michelle, Mom of two healthy twins, Virginia
How My Doctor Made it Better
Even though they had shortfalls, I have fond feelings toward
the doctor and midwife who were involved in my care. I respect
them for admitting when they did not know something. They
were honest about the need for input from other specialists.
We were sent to a perinatologist and two separate high-risk
OB/GYN's who both did separate ultrasounds. We gathered
and were given all the available information so that my
husband and I could be an active part of the decisions made.
After the loss of our son, I felt as though it was truly
a team approach to do decide what was best for our survivor.
When my son was in the NICU, my doctor stopped in person
and called the NICU often to check up on his progress. He
called me a week after I returned home after the delivery.
It helped me to feel that I had his support and sincere
concern.
Losses are individual. A mother who
has lost her child/children is still a mother. Our angel
children are held so dearly in our hearts. Call them by
the names we give. Know that raising a surviving twin is
a unique challenge with mixed emotions. Our lives have been
changed forever. We will never forget our experiences or
our babies. One of the best questions that my doctor asked
me after we lost Aaron was, "Is there anything that
I can do to help you in anyway?" Thank you for caring
enough to read this book.
Lauren, mom of twins, one baby passed away, Massachusetts
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 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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