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Is this a death sentence for this little girl
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Is this a death sentence for this little girl

I got this info on a little girl we were considering for adoption:
Pressures:
Right Ventricle: 86/6(38)
Left Ventricle: 84/5(42)
Aorta:82/751(67)
Distal left pulmonary artery: 61/24(42)
Pulmonary artery: 82/32(52)
21 mm Hg pressure difference can be detected between distal left pulmonary artery and pulmonary artery during continuous pressure monitoring
O2 Sat 66% - 85%
Findings:
The location of heart is normal. Right ventricle is significant enlarged. After right ventricle photographic developing, pulmonary artery, left and right pulmonary arteries are phtotographic developed thereafter, pulmonary artery, left right pulmonary arteries are all expanded, a localized stenosis is noted just above the valve of pulmonary artery(change of post pulmonary artery banding is considered). Only a group of big atrioventricular valve is noted, there is moderate to large scale of contrast media regurgitation in atrioventricular valve.
Left ventricle angiography revealed ascending aorta is much thin than pulmonary artery, the later comes mostly from left ventricle, but with 30% saddling. No obvious ventricle spectrum is noticed, left ventricle is small, no mitral valve is seen, there is a great muscle in the outlet of left ventricle.
There is a slight stenosis in upper part of descending aorta, and also a expanding after stenosis.
Recirculation revealed contrast media entered right atrium, but poor atrium spectrum visualized.
Diagnosis:
1.Congenital heart disease
2.Functional mono-ventricle
3. Post pulmonary artery banding(still pulmonary artery hypertension)
4. Atrial septal defect(huge)
Vventricular septal defect(huge).
Moderate-Severe regurgitation in atrioventricular valve
5.Slight stenosis of aorta

I am told that this little girl has a very poor prognosis and nothing can be done. That she isn't a candidate for the Bioventricular Repair or the Right Dominant Complete Atrioventricular Canal Defect - Unbalanced due to her huge VSD. And that she isn't a candidate for the Fontan procedure because of her high pulmonary artery pressure. The person I spoke with paused here and said, "She isn't a candidate for any procedure with the high pulmonary artery pressure and will end up needing a heart and lung transplant which is a death sentence in and of itself.

Anyone think any differently than that?

Thanks in advance,

Bobbie*
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She would probably need a transplant. My daughter just celebrated her 10th anniversery with her transplant and is doing well. Many patients are going into their 20th year and are doing well. If I had the ability to adopt this little girl, I would certainly do it, the rewards for you both would be worth the price. I realize my daughter still has a terminal illness, but we all suffer a terminal illness....it's called life. We are all born to die, what we make of our life, is what's important.
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Avatar_n_tn
Ten year anniversary, that's AWESOME!!! How are her kidneys? I was told that the anti-rejection medications kill the kidneys. Any problems with that?
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My daughter had kidney dysfunction before the transplant, as a small child. She still has the kidney dysfunction, but the damage has been kept to a minimum.She is not allowed to take Motrin because they say that can damage her kidneys.
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WOW!!!! What an incredible opportunity!  Not everyone gets to have a chance to make such a profound difference in a child's life!  I would love to know what you decided to do, if in fact you have even made a decision.  And no, I don't think you would be a bad person to opt for not adopting her.  Not every one can handle that kind of responsibility, I'm not sure that I could, I'd like to think I could, but I'd be being less than honest if I didn't say that I wasn't sure if I could.  Only you can know about you and what you can handle.  If you can't handle it, you would be doing her a bigger favor to NOT adopt her.

Regardless, I hope you are all doing well!

Shelly
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