[tri-med] Re: looking for heart surgery info

Sorry it has been so long for me to respond, I have been in lurk mode too...
Elanor had two heart defects, a pda (the vessel from the heart to the lungs
that usually closes shortly before or after birth), and considerable vsd
(ventral septal defect).  We waited 6 months to see if the PDA would repair
itself, as they sometimes do.  It didn't, and she had it clipped shut at 6
months (it's funny--you can still see the clip in her x-rays).  She improved
somewhat, but her VSD kept her from really thriving, and she developed
congestive heart failure.  We had her on lasix and digoxin to help her not
retain as much fluid, and to help her heart.  We waited to have the VSD
surgery too, because not only does it sometimes repair itself (I had one and
it grew together when I was still a baby--my cousin had one too, and hers
didn't), but we weren't sure if she was going to survive (you know, the doom
& gloom prognosis).  We didn't want to put her through all that pain and
trauma if it wasn't necessary.  But it became increasingly obvious that she
was sticking around, due to her incredible strength, vibrant spirit, and not
to mention a whole lot of prayer.  Because of her VSD and congestive heart
failure, she came down with every bug around, as well as coming down with
RSV numerous times.  She was in the hospital every month (literally) until
she was 14 months old, most likely not coming home each time.  Each time,
she came home.  Finally, Valentine's Day 2001, she got RSV (even though she
was getting the shots--they missed an appointment to give them--I was so
mad!) and it progressed into pneumonia.  She was put on a ventilator, and we
were told that she wouldn't be able to breathe without it unless we did the
VSD surgery and the fluid retention reversed.  We debated and prayed, and
when it came right down to it, we had to acknowledge that she was a kid like
any other kid, regardless of how many "18s" she had.  When she wasn't asleep
from the sedation, she was smiling at us and proving that she was still
fighting.  If it had been our other daughter, we wouldn't have hesitated to
do the surgery.  So we went ahead with it.  The surgery went even better
than expected, but they touched a nerve to her diaphragm, so one side was
paralyzed.  We went home with a trach and on a ventilator, hoping it would
recover.  It did after about 5 months, and she had her trach repaired, and
did fine without the vent.  After she fully recovered, she grew and thrived.


Elanor has been through a lot more, but I just wanted to go into the heart
stuff.  She is 8 years old now, and she attends physical therapy and public
school when she is well enough (she's had a really hard year--she got back
surgery in November and then proceeded to catch every cold, flu, and
pneumonia known to man--but doing great now!).  She is a joy to everyone who
meets her and makes more of an impact on her world than most people I know.
I will be happy to answer more questions and give you more information if
you want/need it.  


Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne 



Sent: Friday, July 18, 2008 9:19 AM
To: tri-med@xxxxxxxxxxxxx; tri-family@xxxxxxxxxxxxx
Subject: [tri-med] looking for heart surgery info

 Hi all,

It has been a long time since I have written.? I have been in lurk mode for
awhile.

I am about to be contacted by a family that has a newborn who was scheduled
for heart surgery until the genetic tests came back showing T-18.? Now the
hospital "prefers" not to operate.? The ethics committee would "prefer" that
the family decide.? The parents are being given my home number to talk to
someone who has a child with T-18.? My son, Michael is mosaic and has really
been doing so well.? He did not have any heart issues but did have surgery
for TEFistula and EAstrisia(sp?) repair.??? 

Any information you could get to me would be appreciated.? I do not know
much about the baby other than surgery was scheduled until they discovered
the T-18.? 
Of course to me , if all else seemed ok with the baby and he was healthy
enough for surgery, a diagnoses of T18 should not stop it.....but then again
I am not a "professional" so what do I know.?? 

The family is in Westchester in NY.? Thanks again for any help you can
offer.? 

I will be back with a family update soon.


 


?Blessings, 
Monica 

homeschooling Mom to AJ (13), Christine (10), Mary Elizabeth ^l^, Michael
(age 6, Trisomy 18 mosaic AKA Edward's syndrome) and Birgitta (age 5,
adoption finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol
Syndrome, Autism, SID)


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

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

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