[tri-med] How I found a sympathetic doctor at List Mum's request

> One day I hope someone chronicles the changes in attitudes. I still admire
> folk like Ceci so much for their courage even in having a baby with a
> prenatal trisomy diagnosis. Of course Ceci was so creative in
circumventing negative opinion!! And yes Ceci I would love for you to tell
your story
> again for the new folk :-))>>
>

Okay, Karen asked for it.  And wht List Mum wants, List Mum gets from me!!

Yes, we knew about our Anna's diagnosis prenatally from an amnio.  We'd been
scared by the triple screen when we were pregnant with Joe, who turned out
fine, so when we discovered my pregnancy with Anna, we opted for an amnio as
soon as we could.  I would be 42 years old when Anna was born, and we knew
the chances of a genetic disorder were greater with my "Advanced Maternal
Age".  We opted for an amnio because we are the kind of people who look for
as much information as we could get, with the thought that we could make
informed decisions.  Termination was not an option for us.

Now, throw into this that my husband John was offered a new position with
his company that would require us to move from the Kansas City area to
Saginaw, MI.  Although we knew I was pregnant, the job was exactly the next
step that my husband had hoped would open up for him in his career.  So,
John was already working in Saginaw, I was still in Kansas with my 15 year
old daughter and 3 year old son when the amnio was done.  We knew that it
takes 10 - 14 days for the results, so we told my OB that he was NOT to call
us with the results until Friday, when we knew that John was going to be on
a plane on his way home.

So when the phone rang on Tuesday, the last person I expected on the phone
was my OB.  He started to tell me that my baby had Trisomy 18, that it was
lethal to the fetus and my husband and I needed to make a decision.  Imagine
my fear as I said, "Whoa, wait a minute, what condition?  Tri - What?  Can
you spell that for me?????"  He repeated his information and urged us to get
into a geneticist right away, the next day if possible, because if we were
going to take "action" (i.e. an abortion), we needed to move right away.  I,
of course, was devastated.  I did ask him why he had called me on Tuesday,
when we specifically asked not to be called until Friday.  His response:
"You did?  Why, did you suspect something was wrong?  Oh, well, this was too
important for me to wait until Friday."

Of course, I called up John at work in Saginaw right away, crying
hysterically.  He got on the next plane that could bring him back home, but
it took almost 10 hours for him to get home due to a variety of airline
complications.  Probably the worst hours of my life, not to mention his,
next to Anna's passing.

When John got home that night, he went on the internet and found Karen's
website and excellent explanation of Trisomy 18.  When we went to the
geneticist the next day, we, of course, heard the bad statistics, the no
quality of life argument, that people from SOFT had their own agenda.  We
asked him for any brochures, pamphlets, etc, information for us.  He gave us
two pages photocopied out of a medical textbook.  Both he and my OB strongly
urged termination, even though we had already told them that was not an
option for us.  After the geneticist, we visited my OB again.  I told him I
would continue my pregnancy and asked how he would proceed with our care.
He kind of looked blankly at me and said, "Well, I guess we could do a Level
2 Sonogram, but it's not going to change anything.  And when your baby is
born, you won't be able to find any doctors who are willing to treat your
baby because of the Trisomy 18. "

Okay, now I'm moving and I have to find an OB who will take me with my
Trisomy 18 pregnancy without really knowing where to look.  One day I was
talking to a neighbor about my dilemma.  She came up with a brilliant idea.
Her mom was very involved in the Right To Life movement, and she was pretty
sure they kept a list of doctors who were considered Pro-Life.  So, Beth
contacted her mom, who got me the phone number of a right to life
organization in Saginaw. I called the office, explained my situation and
they immediately gave me the name of Dr. Wechter, a neonatologist/ob in
Saginaw.  I then called Dr. Wechter's office and talked to his nurse.  Now,
IMHO, Dr. Wechter and his office should be cloned and spread everywhere as
an advocate for those who want to continue high risk pregnancies.  When I
explained my circumstances to his nurse, she asked if we'd had a Level 2
sonogram yet, and I said no.  She could hardly believe it and asked when I
was going to be in town next.  She got me scheduled with Dr. Wechter for a
Level 2 ultrasound at that time.

What a wonderful man!  He spent over an hour with John and I, looking at
Anna, trying over and over to get good views of her.  He did not pull any
punches, but understood that all we wanted was whatever chance we had for
Anna to have the best life she could.  His prognosis:  she did not have any
profound medical issues at this time that could be detected by sonogram.  He
then offered me the opportunity to use a high risk clinic that he oversaw
for the remainder of my pre-natal care.

Dr. Wechter did many more sonograms of Anna, and as her due date approached,
we discussed delivery options.  He explained that many times these babies
have a tough time with delivery, and that if we wanted to opt for a
c-section, that he would perform it for us, as I did not show any medical
reason not to have the surgery.  So, we made it our plan that if Anna showed
any distress, we wanted a surgery.  He went so far as to give us his
personal pager number, not his practice pager, if we went to the hospital
and we were given grief about doing a c-section due to the trisomy.  He also
help us set up visits to the NICU so that we could meet with the
neonatologists and develop a plan for when Anna was born.  And he gave us
recommendations for pediatricians that he felt would be not only
knowledgeable, but understanding of our wants and desires.  My calls and
appointments were given more credence when I stated, "Dr. Wechter said I
should give you a call."

As it turned out, Anna was delivered 10 days after her due date by scheduled
c-section.  She was breech and I was showing no signs of getting ready to
deliver.  Because we had made plans in advance, everything at the hospital
went very smoothly.  The staff all knew how we wanted things handled.  We
decided that since Anna did not have any acute medical conditions that we
knew of, we wanted fairly aggressive measures taken to make sure Anna had a
chance at life.  After she was born, we would re-assess what measures we
would take based on the information the medical staff provided us with
closer examination.  After two weeks in NICU, we took Anna home with us.

Fortunately, we had Anna with us for almost 3 months.  Unfortunately, that's
not near enough time.  But, I believe our time with her was better for us
because we had learned all we could beforehand.  We found this list, joined
SOFT and even went to the SOFT convention in Pittsburgh.  (We certainly drew
attention there!). And we found this wonderful doctor, who understood how we
felt about this new life.

Okay, so I don't recommend moving 1000 miles to find a doctor, but for those
of you struggling with your doctor's attitudes, I highly recommend a right
to life group as a resource.  If there is a local organization who works
with disabled children, they, too, can be a great resource.  We found a
pediatric orthopedic doctor who was highly involved with such an
organization in our area.

That's my story in a not-so-small nutshell!  Know that I think of you all
often even though I don't post much, and reading your posts is a part of my
daily life.

Take care.
Ceci, mom to angel Anna, T-18

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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