20 Great Hospitals for Hypoplastic Left Heart Syndrome

A couple weeks ago our prenatal son was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).   A doctor in Ho Chi Minh City told us he will need 3 operations the first few years of his life, and has about a 50% chance of surviving them.

The baby who keeps on fighting

The baby who keeps on fighting


Improving the odds

I’ve since found that his chances are much better if operated on in the United States. Children’s hospitals with good congenital heart programs boast survival rates as high as 80 to 95%.  Centers and surgeons who perform more surgeries have higher survival rates. (– Relative Impact of Surgeon and Center Volume on Early Mortality Following the Norwood Operation, Christoph P. Hornik, et al.)

The Norwood Procedure

The Norwood procedure (or a hybrid) is the first step in treating HLHS.   Compiled from the best children’s hospitals in the country, Here are 20 great hospitals that have a significant volume of Norwood procedures combined with excellent survival rates.

The best hospitals for the Norwood procedure are dispersed across the country, with clustering around population centers. In selecting these 20, I looked at four criteria, Norwood survival rates, Norwood volume, Congenital heart program rating, and infection prevention rating. This data comes from the US News Best Hospitals for Pediatric Cardiology & Heart Surgery rankings.  Clicking on a hospital in that list, such as Boston Children’s hospital,  shows a breakdown of categories.  On that page, scrolling down and clicking on Cardiology and Heart Surgery reveals key criteria, such as Norwood/hybrid surgery survival. Here’s the combined data for the 20 great hospitals for Hypoplastic Left Heart Syndrome.

Norwood survival rates

Obviously the biggest concern is survival after the Norwood procedure.  However, hospitals have different criteria for which patients they accept.  Some hospitals avoid high risk cases, while the best hospitals take the riskier cases.  So hospitals not equipped to handle the hardest cases may have artificially high survival rates. After comparing survival rates, it’s important to consider additional criteria.

Norwood volume

The relationship between number of procedures performed and survival rates is well established.  The  Hypoplastic Left Heart Syndrome (HLHS) Information Page says

Remember that the top hospitals perform 50+ Norwoods annually, and achieve approximately a 95% survival rate – this is the bar to which you should compare any hospital.

They also encourage us to ask for this data from hospitals we are considering for treatment.

Congenital heart program rating

The hospitals overall Congenital heart rating is important, because after the Norwood procedure, your child will require the Bi-directional Glenn Operation at around 6 months to a year, and the Fontan Operation at around 18 to 36 months.  You’ll probably want these procedures done at the same hospital.

Infection prevention rating.

This is another important indicator of the overall quality of the hospital. Most of the hospitals ranked by US News fare very well in this category.  In hindsight, this ranking has little to do with which hospitals made this list.  However it’s an important consideration particularly when looking at hospitals in developing countries.

The most important criteria

Your Support system  is more important than any of the criteria above.  The map shows that in the United States, there is a hospital near you.  There are dozens of additional children’s hospitals ranked by US News that are well equipped to perform the Norwood procedure.  So it’s important to get treatment near Family and friends.

Additional Support

Little Hearts Picnic

The  Hypoplastic Left Heart Syndrome (HLHS) Information Page list’s several support groups including California Heart ConnectionLittle Hearts, Inc., The Congenital Heart Information Network.   Linked by Heart connects families affected by HLHS.


Picture of Hope

Your family’s most powerful weapon is hope.  Staying positive, eating healthy, exercising, and talking to your child in the womb all strengthen the child’s inherent resolve to live and have an incalculable effect on the odds beyond any choice of hospitals. The picture above includes some children born with HLHS who are now in college. The struggle to live a meaningful life continues for every one of us.  As you shift your focus to this struggle for your child, it is my hope that it leads to happiness and fulfillment you never imagined.

Outgunned Warriors no match for blazing Heat

Saigon Heat in the playoff hunt!



By Harry Hodge
Since the Saigon Heat team started, you can’t say the team has claimed too many must-win games. Sunday they finally came through.
In their last home game before an extended road swing throughout Southeast Asia, the Heat were poor hosts for the visiting Indonesia Warriors, thumping them 72-61 before a jubilant packed house.
American Justin Williams was again in fine form for the Heat. The former Houston Rocket scored 17 points and pulled down 18 rebounds, while fellow Americans Dustin Scott and David Arnold had 19 and 17 points, respectively. Birthday boy Leo Avenido from the Philippines tallied 16. Another American, Michael Fey, netted 23 points and 21 rebounds for Indonesia.
The Heat led by as much as 20 in the third quarter, and the outcome was never really in doubt from early on. Some notable developments included the Heat sliding into fourth place in…

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Mighty winter storm ‘Petunia’ heads to Northeast


8 to 10 cumulative inches of snow are expected tonight and tomorrow morning in the NY area.  The storm, named Petunia, will be accompanied by frigid temperatures as low as  15°F Thursday evening, followed by an icy cold 9 °F Friday night.  The good news is that temperatures will rise over the weekend to 46 °F Sunday.  Rain on Sunday should melt away any accumulation, rendering v, Petunia, a memory quickly.

Facebook “key logs” users even if the “status” is not posted

Listening to keystrokes is easy to do with javascript, I’m sure many sites do this.

addEventListener(“keypress”, function(event){ … }

You can see it in action by entering text at this keypress demo:

This Got My Attention

More indications of how messed up our relationship with social media companies has become. The LA Times reports that Facebook “key logs” users (records users’ keystrokes) even when the “status” is not published. Yes, Facebook is watching everything keystroke and mouse movement you make when you visit their website.

Facebook has said that it is within its terms of service to see what users are typing even when the status or comment is never posted on the social network.

The Menlo Park, Calif., company confirmed that it can track users’ unpublished posts after two Facebook researchers disclosed that they had tracked the activity of about 5 million random Facebook users in the U.S. and England.

The researchers’ study looked at how often these users censored themselves while typing posts and comments on Facebook. If users typed more than five characters, the content was tracked. It was considered to be self-censored…

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The NY Office

The New York Public Library is a great remote work location.  There’s free wifi everywhere, and  The Rose Main Reading Room in this photo has outlets for laptops.


There’s even a snack shop, and museum like exhibits.  The current main exhibit is a tribute to Nelson Mandela.

The New York Public Library, glass negative fr...

The New York Public Library, glass negative from 1908 depicting horse carriages and trolleys. Late stage construction: trademark lions not yet installed. (Photo credit: Wikipedia)


I’ve had pretty good luck seeing snow when I travel around Christmas time.
Lagrangeville is a small town in upstate New York. it was founded by
French settler, and cousin of Henry Hudson, Antoine LaGrange. or something
to that effect. I’m sure if you look it up on Wikipedia there’s a cool
story about how Lagrangeville was founded. Just remember though it’s
Wikipedia, it could be made up.

At 18° F, -8 Celcius, Lagrangeville would be a great vacation spot for a
global warming doubter. Later today I’ll be at a Christmas party with
those who could make it here in the storm. At the party, I’m going to start
a rumor that global warming deniers have gone to Lagrangeville courts to
have thermometers removed from the government buildings, because their
beliefs are violated. If anyone asks you about that, back me up. or
better yet, someone start an article on Wikipedia.

via Flickr http://flic.kr/p/ijnXnT