[tri-med] Re: T-18 help

Hi Tara and welcome to the group!
My 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 
University of Chicago Hospital (very good hospital) and it showed that 
fixing her PDA would indeed not fix her pulmonary hypertension.  Now, had 
we fixed her PDA early on, who knows if her PH would have gone away.  We 
were always told that once our daughter had PH, there was nothing we could 
do, so we honestly didn't think to ask what the cause was.  We assumed it 
was the PDA.  BTW - we had a second opinion with a cardiologist who is an 
advocate for surgeries on T-18 children.  She agreed with the diagnosis 
and prognosis.

Has your daughter had a heart cath done?  If not, perhaps you could have 
one done to see definitively how the PDA is affecting or if it is causing 
the PH.

Our daughter, Ella, was never on any heart medications and she survived 5 
years.  We lost her on a G-tube surgery and her heart gave out 6 days 
later.  Perhaps if we had her on oxygen and meds, she might have been 
strong for the surgery.

You have to ask yourself what kind of balance you want for your daughter. 
For instance, my husband and I decided not to have her on meds - she was 
never quite herself on them.  We decided against the oxygen b/c she HATED 
it!  We decided that we'd rather her be happy and live as long as God let 
her than inundate her with all that stuff.  However, had she tolerated 
both, we certainly would have gone that route.

Each parent is different.  Know that whatever decisions you make for your 
daughter is out of love.  You will never have any regrets!

~Melissa Marohn
mom to Angel Ella (T-18), Luke and Gabe, and wife to Eric







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[tri-med] T-18 help









Hi!  My name is Tara and I have a 9½ month old daughter, Olivia, with 
full T-18.  I would love to ask you a question.  Olivia has just been 
diagnosed with Pulmonary Hypertension.  She was born with a PDA.  No 
other problems.  The PDA has now basicaly closed on its own.  I would 
just like to know your thoughts on the PH.  The doctor seems to think 
"this will be what gets her".  He felt it would just get progressively 
worse.  She is on viagra now.  I am just wondering if you have any 
insight or things you might have done different.  I do not want to look 
back and wish I could have done more.  I just want to make sure that I do 
everything I can!  Thank you so much for your time!

Regards, 
Tara Torian

PS... here is a picture of my precious Olivia.


 
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