[tri-med] Re: a second child with a trisomy?

I'm curious .....How did you find out that the dughter
you're carrying now has Trisomy 18?
               Karen

--- MeierLaw <meierlaw@xxxxxxxxxxxx> wrote:

> Yes!  I am currently 32 weeks pregnant with my 2nd
> Trisomy 18 daughter. 
> However, unlike my 4-1/2 year old daughter, who is
> considered "mild and high 
> functioning", this baby has catastrophic heart
> defects and we do not know if 
> she will live.  My older daughter, Rachel, had a
> large PDA which was 
> repaired, a moderate VSD that closed on it's own and
> she still has a small 
> ASD that is considered inconsequential.  The new
> baby (Regan) has a 
> variation of hypoplastic (i.e. small) left heart
> syndrome, which, on a scale 
> of 1-10 in badness is considered an 8.  Rachel's
> heart defects are 
> considered a 1 to 2.  Regan is no mitral valve, but
> there is a double outlet 
> right ventricle.  It was not possible to see the
> condition of the aorta on 
> the last fetal echo, so an echo will need to be done
> immediately after she 
> is born.   If the aorta is decent and she isn't
> otherwise failing just from 
> being an 18, the cardiologist said she could
> actually live years like that 
> just by banding the pulmonary artery.  If the aorta
> is lousy and she isn't 
> otherwise failing just from being an 18, we will
> need to see whether she is 
> strong enough for any kind of heroic surgery.  The
> surgeon didn't say no to 
> the massive Norwood Operation, but we realize that
> it is a longshot and that 
> Regan would probably be the first newborn 18 in the
> entire world to receive 
> it.
> 
> I want to add that we are very fortunate because 1)
> we live in a city with a 
> world class Children's hospital (Cincinnati
> Children's Hospital Medical 
> Center or CCHMC), 2) we have much experience with
> heart disease (Rachel was 
> born with three holes in her heart and our daughter,
> Jillian, that was 
> adopted from China had open heart surgery for a
> large VSD two years ago - 
> with complications) and 3) we have a living Trisomy
> 18 child, so the 
> cardiologist and surgeon were willing to give us the
> time of day.  The 
> surgeon even went so far as to say that there are
> some experimental 
> surgeries that might be worth considering instead of
> the Norwood Operation 
> if Regan's aorta is bad.  He is, of course,
> reluctant to agree in advance to 
> do the Norwood Operation to reconstruct her heart,
> but he is willing to 
> consider it if she isn't otherwise failing at birth.
>  There is a 15%-25% 
> mortality rate with the operation even in
> chromosomally normal children.  If 
> Regan's aorta is bad, she will surely die without
> the operation, so we are 
> willing to take the risk and push the surgeon to do
> it if she looks like she 
> looks stable enough and isn't having apnea right
> after birth.
> 
> We have a meeting next week with the neonatologist
> at the hospital where I 
> am going to deliver, so we can all get on the same
> page with our birth plan. 
> She will need to be in the operating room to
> stabilize the baby at birth and 
> then the cardiac team from CCHMC will need to come
> over and be on hand to do 
> the echo.  We will have to make quick decisions once
> we see how Regan is 
> doing.  Many phone calls and meetings have gone into
> this plan, but we want 
> to give our child every chance possible.  We feel
> that she should be treated 
> like any chromosomally normal child, so we are not
> leaving anything to 
> chance.
> 
> We even consulted with Dr. Carey (of SOFT) out in
> Salt Lake City.  He said 
> it is unlikely that a surgeon would want to go
> forward on a newborn, but he 
> wasn't negative.  He was realistic about the
> situation just like we are and 
> agreed that all would depend on the baby's condition
> at birth.  Hypoplastic 
> Left Heart Syndrome is very bad for any child.
> 
> I hope this isn't more information than people on
> the list want, but I also 
> think it is worth sharing because we were not turned
> away.  There are 
> cardiologists in this world who are willing work
> with parents and they are 
> located at CCHMC!  The surgeon we spoke with was
> very kind and simply wanted 
> us to understand the risks.  Never at any time did
> he treat us like we were 
> crazy for considering anything but "compassionate
> care" for our daughter.
> 
> If anyone wants additional information or has any
> questions, please feel 
> free to email me privately.
> 
> Regards to all-
> 
> Aimee in Cincinnati, Ohio  (USA)
> (wife of Bob; mother to Rachel (full T-18) 4/18/01,
> Jillian Yun Ping 
> 6/18/02, Ian 7/31/03)
> 
> 
> 
> ----- Original Message ----- 
> From: "karen thorsten" <karen7458@xxxxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent: Tuesday, December 13, 2005 9:49 AM
> Subject: [tri-med] a second child with a trisomy?
> 
> 
> > Hi everyone,
> > I'm just curious if anyone on the list has had a
> > second child with a trisomy? And if so, would you
> > share the specifics?
> >         Thanks Much,  Karen (grandma to Julian, 2
> 1/2
> > yrs.old, Mosaic Partial Trisomy 1)
> >
> >
> >
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> 
> 
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> 
> 


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