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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 cared
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
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