[Bruno Matos]

Hello, I´m from Portugal, working in a PICU just for congenital cardiopathies.

I need to know if someone have some experience in the management of Norwood (stage I) post op: opened or closed sternum, what drugs you use, kind of ventilation.... We are having a high number of deaths, so ... I hope someone could help.

Thanks.

[hoolahan]

Hi there! I used to work in a similar unit, right about the time I stopped doing peds we started doing the Norwood procedure. Unfortunately, I can't recall much about it anymore.

But, I will say that it is a high risk procedure in the first place!! As I am sure you know. I mean this poor kids would not live long w essentially a single ventricle.

I can tell you that I remember some kids were "success" stories, but needed to have other surgeries to actually create an asd type of shunt to relieve PA pressures.

I wish I could tell you more, but I can say from what I have heard, it is not all it's cracked up to be.

Here are a few good links I found, the last one is short, but good, you will need adobe reader to open it.

http://www.choa.org/library/conditio..._norwood.shtml

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

http://www.chw.org/documents/NorwoodStrategies.pdf

[lily0004us]

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[KarenKidsRN]

I don't believe I have ever seen a Norwood Patient do well in 11 years of Peds CVICU nursing. We practically begged the surgeons to stop doing them because they never survived and it seemed to us to be cruel to give the family false hope. I have heard there are some places where they have inproved on the technique and have some success, but it is not something I have ever seen. I used to have to try not to laugh when surgeons would qoute the parents a 40% success rate as the actual failure /death rate of Norwoods in our unit was closer to 99%.

[kidsccrn]

Hi I just left a unit where they do a fair number of norwoods. The surgeon is also doing the RV to PA shunt instead of the BT shunt. I'm not sure it's any better these poor babies still go though hell and many just up and die. We just had one going home the next day arrested and died, another ( actually 2 ) were found dead by their parents in the AM. I am very torn about this procedure are we really giving them quality of life or just prolonging the inevitable?

[KarenKidsRN]

I lean heavily towards the opinion that we are just prolonging their suffering with the inevitable outcome being the same. But then where I worked we did a lot of transplants and many of them did very well so that is what I compare it to, and I don't think that is a fair comparison. I have also heard of several who died at home or in the first few days after discharge. I just wish the surgeons would be a little more honest with parents up front on how bad it can be. But then probably no one would ever consent and they couldn't do their "experimental" surgery.

The surgeon who did the most Norwoods, was an extermemly arrogant person who would operate on anyone regardless of the risks involved, he was famous for being sloppy and leaving his patients bleeding too much postop but of course we were never allowed to say anything about it to anyone. And he appealed to parents because he came across as being very positive and up beat. So many times I wished I could get a secret anonymous message to pre-op parents somehow to not sign the consent if he was their surgeon.

When that particular surgeon left to go to another facility, he tried to recruit some of the nurses he had regularly insulted into going with him and guess what, NO takers! You couldn't pay me enough to work with someone like that on a regular basis. Even when his patients were clearly dying all the parents heard was
"everything looks fine, just a few minor setbacks" Then after the patient died it was always the nurses fault. "Someone got air in the lines" was his favorite excuse.

I am a firm believer that sometimes the kindest thing we can do is let nature take its course. There are worse things than dying, and to me being paralyzed with an open chest on a vent for weeks with no one able to accurately asses your pain or sedation level would definitely be one of them.

[anndor]

Hi
I work in a cardiac paediatric unit in Auckland in little old New Zealand. (just beside Australia if you've never heard of it!) I used to agree with you about the poor outlook of Norwoods patients, but we now have excellent results. I think our surgeons also use the RV PA shunt. They also put our success down to perfusion techniques, and (of course) specialised nursing care post-op. The patients are all run with O2 sats from 75 - 85%, and CO2 on the high side so the child is slightly acidotic. We have a 90% success rate with stage 1, 98% success rate with stage 2 (Glenns procedure), and are just starting to do more of the stage3s (Fontan) as they turn 4 years old. I looked after a four year old having completion of her Fontan yesterday. She is the same size as all her friends, eats well, and pretty much keeps up with them physically. She is the apple of her Dad's eye, and I don't think he regrets the decision to go through with the surgeries. She was discharged from ICU on day one post-op, and will probably be home in a couple of weeks. We need to wait for about 10 or 20 years to see how these kids will do long term, but the idea is that they will be able to have a transplant if there hearts fail as adults. In 10 - 20 years time, who knows what drugs and technology will be available to them. Do we have the right to deny these children and their parents that chance? If your surgeons are having bad results, maybe they need to go further afield for more training, as our top surgeon has done. They have fantastic results in Birmingham in the UK as well.

[kids]

I would suggest contacting Dr. Ross Ungerleider at OHSU/Doernbecher in Portland Oregon. He may be willing to answer your questions. I have NO CLUE what techniques he is using with the Norwood but in researching him for my Grandson I found he has a good success rate. His specialty is HLHS and he spends a fair amount of his time traveling, speaking & teaching both in the US and overseas.

(Hint: do a Google search using his name, eventually you will find a link to Oregon Health Sciences University and his email address is on their sit. Ignore ANY other email addresses, he was a t Duke for 14 years and that address still comes up but doesn't forward to him.)

[blueinplaid]

I was surprised to hear that some people have had such bad experiences with the Norwood! Our unit had great success with it with sats avg high 70's to low 80's.

[Bruno Matos]

I'm very happy with this thread.
Nowadays we use the RV-PA shunt. The post op it's much easier. The follow up more stable until the Glenn's shunt.

Actually we have 3 kids with the 3 stages completed, the oldest is 12.

Best regards.