Update, SCT at 27w, Boston high risk obstetrics

One member of the sacrococcygeal teratoma (SCT) and others support
group
shared with me helpful personal experience re
Boston hospitals and management of SCT. And here on
misc.kids.pregnancy,
Caledonia and Lady Penelope Creighton-Ward also provided helpful intel.

Thank you, ladies! Here follows an update. It may be a little too
graphic for some.

AFCC, Children's Hospital Boston, is coordinating my care. At
approximately
24w, I traveled to Boston where AFCC staff did a thorough workup,
including a
very extensive and high resolution US and an MRI. They gave me a copy
on CD
of the complete US and MRI imaging results. Both imaging modalities
were
informative, but the MRI showed most clearly the extent of the SCT at
that time.
(It clearly is not a neural tube defect, which was a diagnosis I
received in my
home state. I am very glad I did not accept the NTD diagnosis). I
then had a
consultation with Dr. Terry Buchmiller, a board certified pediatric
surgeon with
prior experience resectioning 8 or 10 SCTs. Dr. Buchmiller also gave
me a
chapter on SCTs from a just-published textbook that I had not seen.

I also had consultations with the high risk obstetrics practices at
Brigham &
Women's Hospital and at Beth Israel Deaconess Medical Center. AT
BIDMC, I
really liked Dr. Kee-Hak Lim.

Now at 27w, my baby's SCT is still relatively small and not
vascularized, the
baby's brain and heart morphology continue to appear normal, and the
amiotic
fluid volume also is normal. That is the good news, and it is indeed
very good
news. However, there is also some bad news: in contrast to no
significant
growth between 19w and 25w, between 25w and 27w the SCT has grown to 3
or 4x its volume at 25w, and it is now entirely internal and mostly
solid. It has
begun to displace the baby's bladder, and one of the baby's kidneys
looks a
little "suspicious".

I am making plans to relocate for a couple of months to the Boston
area, from
about 34w until a few weeks after the baby's delivery and surgery
(hopefully in
that order). First to outside the city, then to an (expensive!)
apartment close
to BIDMC and CHB (both are in the Longwood "medical district"). Being
close is very important, because my prior labors (Monkey Boy at full
term and
a MC at 12 weeks) were precipitate. Unless development of the SCT
between
now and my EDD precludes it, I will continue to plan for a normal (but
fast)
vaginal delivery.

Wow... How are you doing with all this? Will your family be able to go
with you, and do you know anyone in the Boston area? Prayers for you
and the little one...

Em
mama to Micah, 11/14/04

Unless development of the SCT
between
now and my EDD precludes it, I will continue to plan for a normal (but
fast)
vaginal delivery.

You and the babe are in my prayers, you seem very very informed and prepared
for the situation at hand.

Good luck and my prayers, Cindi

wow, sounds like you are having a difficult time, it must be particularly
difficult that you were not supported by the doctors at home, but from the
few stories I read about SCT it also sounds like your baby is doing really
well.

Wishing you loads of luck from now until delivery (and afterwards too!)
please keep us all updated.

Anne

I'm praying for you and the baby. It is a lot for you to handle--a
"normal" pregnancy is stressful enough. I'm glad you are finding help
and information, but sorry it has to be far from home.

Leslie

All my best wishes coming to you and bubs. Take care of yourselves.


--
Pip

My girls :
DD1 Jasmine - 5 weeks early - 21 March 02 -
"I'm a big girl cause I go to school kindy"

DD2 Abby - 8 weeks early - 3 Feb 05 -
Took her first steps on her 1st Birthday.

"Yes you can drive me insane just by talking to me!"


--
"Pologirl" wrote in message
ups.com...
One member of the sacrococcygeal teratoma (SCT) and others support
snip: