[tri-med] Re: T-18 help

Wow, I needed that!  Olivias cardiologist said that her pda was shunting from 
the left to the right which was not a problem.  She has had no problems other 
than the PH.  She has been on the viagra for not quite 2 months.  She is so 
happy and alert now.  I just can not sit back and say...okay... this is what 
is going to get her.  I want to know that I did my part.  That is why I am 
searching for insight.  The cardiologist has adapted the attitude from day one 
to just make her comfortable.  I never opted for the G tube surgery.  We 
actually manually tube feed her every 6 hours by putting the tube down her 
throat.  She gags for a second and then is fine.  What is the process of a 
heart cath?  As for the PH, can they live with this for years or is it a 
sudden death thing?  Thanks so much for your help.  I pray for the 5 years 
that you had with your Ella.  I know that Olivia is in Gods hands and will be 
where she needs to be!
with much love, 
Tara, mom to Olivia (9 m T18), Sydney (4) and wife to James
Mobile, AL


-----Original Message-----
From: Melissa_Marohn@xxxxxxxxxxxx
To: tri-med@xxxxxxxxxxxxx
Cc: Tri-Med@xxxxxxxxxxxxx; tri-med-bounce@xxxxxxxxxxxxx
Sent: Tue, 23 Sep 2008 8:20 am
Subject: [tri-med] Re: T-18 help



Hi Tara and welcome to the group!
y daughter was born with 6 heart defects, one of which was a very large 
1/3 size of her heart) PDA.  At 11months old, we did a heart cath at 
ni
versity of Chicago Hospital (very good hospital) and it showed that 
ixing her PDA would indeed not fix her pulmonary hypertension.  Now, had 
e fixed her PDA early on, who knows if her PH would have gone away.  We 
ere always told that once our daughter had PH, there was nothing we could 
o, so we honestly didn't think to ask what the cause was.  We assumed it 
as the PDA.  BTW - we had a second opinion with a cardiologist who is an 
dvocate for surgeries on T-18 children.  She agreed with the diagnosis 
nd prognosis.
Has your daughter had a heart cath done?  If not, perhaps you could have 
ne done to see definitively how the PDA is affecting or if it is causing 
he PH.
Our daughter, Ella, was never on any heart medications and she survived 5 
ears.  We lost her on a G-tube surgery and her heart gave out 6 days 
ater.  Perhaps if we had her on oxygen and meds, she might have been 
trong for the surgery.
You have to ask yourself what kind of balance you want for your daughter. 
or instance, my husband and I decided not to have her on meds - she was 
ever quite herself on them.  We decided against the oxygen b/c she HATED 
t!  We decided that we'd rather her be happy and live as long as God let 
er than inundate her with all that stuff.  However, had she tolerated 
oth, we certainly would have gone that route.
Each parent is different.  Know that whatever decisions you make for your 
aughter is out of love.  You will n
ever have any regrets!
~Melissa Marohn
om to Angel Ella (T-18), Luke and Gabe, and wife to Eric



taraforte@xxxxxxx 
ent by: tri-med-bounce@xxxxxxxxxxxxx
9/22/2008 06:15 PM 
lease respond to
ri-med@xxxxxxxxxxxxx

o
ri-Med@xxxxxxxxxxxxx
c
Subject
tri-med] T-18 help




Hi!�  My name is Tara and I have a 9�½ month old daughter, Olivia,� with 
ull T-18.Ã? Ã? I would love to ask you a question.Ã?  Olivia has just been 
iagnosed with Pulmonary Hypertension.Ã? Ã? She was born with a PDA.Ã?  No 
ther problems.Ã?  The PDA has now basicaly closed on its own.Ã?  I would 
ust like to know your thoughts on the PH.Ã?  The doctor seems to think 
this will be what gets her".Ã?  HeÃ? felt it would just get progressively 
orse. Ã? She is on viagra now.Ã?  I am just wondering if you have any 
nsight or things you might have done different.Ã?  I do not want to look 
ack and wish I could have done more.Ã?  I just want to make sure that I do 
verything I can!Ã?  Thank you so much for your time!
Regards, 
ara Torian
PS... here is a picture of my precious Olivia.


iew full size

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