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
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.
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.
Little Hearts Picnic
The Hypoplastic Left Heart Syndrome (HLHS) Information Page list’s several support groups including California Heart Connection, Little 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.