Hypoplastic Left Heart Syndrome

hoolahan, ASN, RN · Dec 9, 2002

{{{{Cokie}}}}} Is there any hope the sonogram is wrong? I truly hope so. I used to work in a cardiac specialty hospital and we did repairs on kids w congenital anomalies. They had just started to do the Norwood procedure in that hospital, and I didn't see good outcomes. I did see a few kids come in for repairs after all the stages were done, 10 yrs old, but had been a cardiac cripple, spent most of her ten years in hospitals.

From what I have read on this site, not too many other are seeing good outcomes. If I had a child w hplhs, I am not sure what I would do.

https://allnurses.com/forums/showthread.php?s=&threadid=25427&highlight=Norwood+procedure

I will keep you and your family in my prayers.

kids · Dec 9, 2002

I am very sorry for what your family is going through. It will be a hard road to travel.

My only experience with hplhs is a 5 yo on my homecarecaseload. He had an A/R to heparin and clotted all of his peripheral vessels following the phase 1 of the Norwood, consequently he is not a candidate for phase 2 or transplant.

He is a success given his circumstances in that he weaned from the vent at 18 months. He has mild DD (chronic hypoxia) and attends preschool. We have had no problems with significant infection, he does have very poor endurance at active play but is able to self pace is activities. He is on no cardiac meds (weaned off). However, resting his resting SpO2 is in the high 70s to low 80s and does not respond to O2. He also still has a trach (mult faled attempts @ plugging) and he has a Mic-key that is used for meds only (the theory is if he needs the GT @ a later time he would not survive surgical replacement).

cokie · Dec 9, 2002

i too have been praying that the sonogram is wrong. but apparently my sister went to the second one, the one attended by the cardiac specialist, and she said (my sister), that she could see that side of the heart just sitting there. i believe that they are being led down a long road of heartbreak and surgery, and more heartbreak. i have been sick about this since i found out. i was visiting (i live 2200 miles away) when she had the alarming sonogram. that was back in september. we have all been heartsick since then. thank you for posting your replies. is there any better news......heard there have been great breakthroughs in the last 5 years. sounds like the procedure is still the same though. is it called the norwood. that's the one that my sister talks about. she also mentions stages. thanks again and please post anything else that you know.

kids · Dec 10, 2002

I did a quick search and found some info, some with statistics:

http://author.emedicine.com/PED/topic2825.htm

http://www.ucch.org/sections/cardio/norwood.html

http://www.ctsnet.org/doc/2794

http://www.ctsnet.org/doc/2487

I also suggest:

http://www.ctsnet.org/ and do a search for hlhs

NicuGal, MSN, RN · Dec 10, 2002

I am sorry about what your family is going thru. I have seen some kids with left hypoplastic do okay, we send our kids to Cleveland Clinic and most of them have the Norwood procedure. We have even gotten a few of the kids back post op, and they do pretty well.

Is she delivering at a hospital that is equipped to take care of the baby? Or is the baby being transported to an outlying facility? We usually don't hang on to those kids for long as our cardiologists make arrangements for us to take the baby as soon as we can after stabilizing it. I believe that they put the baby on Ecmo after arrival if it is very unstable.

I have seen some kids that have no left side whatsoever and we usually let them go.

Again, I am so sorry

hoolahan, ASN, RN · Dec 10, 2002

Excellent point NICUGal. I think if I were your sister, I would try to deliver at the hospital where they can actually manage the baby.

Also, your sister will be able to be close to the baby, instead of at another hospital.

My prayers will be with you and your family.

lily0004us · Dec 10, 2002

cokie · Dec 10, 2002

thank you all for your heartfelt concerns. thank you also for all the great information. will forward it on to my sister. she will filter it and forward some on to her son and daughter-in-law. they are actually at an appointment right now as we speak.

Wren · Jan 12, 2003

Cokie.... how is the baby and your family doing? Hope the hplhs wasn't as severe as you feared.....