Hypoplastic Left Heart Syndrome (HLHS)
This is my Hypoplastic Left Heart Syndrome blog. Its just a general collection of links that I've come across which address many different aspects of HLHS and other forms of congenital heart disease. I initially decided to start this blog so that I'd have access to these links, some of them being very hard to find, from any computer. Also so that I could share the links with other parents and caregivers who might be interested.
Thursday, August 26, 2004
Monday, August 23, 2004
CBS News - Change Of Heart
Another feel-good story. This time about an infant recieving a mismatched donor heart.CBS News | Change Of Heart | August 20, 2004�13:04:11
Atrial Septal Defect Closure: Details, Preparation & Recovery: BCM Dept of Surgery
Though the premise of this page is to explain the surgical procedure and process a patient will go through for an ASD closure, the majority of this applies to anyone facing an open-heart surgery.
Atrial Septal Defect Closure: Details, Preparation & Recovery: BCM Dept of Surgery
The use of anticoagulation in pediatric cardiac disease
I found this while looking for long-term results and the like in regards to the Fontan procedure. I've just recently thought to look into adult studies and there is more out there than I expected. So some of the future posts might be predominantly way-post fontan, but isn't that what we're all hoping for?
Boris JR, Harris MA. The use of anticoagulation in pediatric cardiac disease. Images Paediatr Cardiol 2003;16
Friday, August 20, 2004
MSNBC - Saving a broken heart
A feel-good story about a little girl with HLHS. Nice to see the media telling a happy story, for once.
MSNBC - Saving a broken heart
NOVA Online | Electric Heart | Operation: Heart Transplant
This is an interesting interactive site that walks you through the very basic steps of a heart transplant - from the surgeon's perspective.
Even though it deals with a heart transplant and not HLHS itself, there still remail a lot of parallels to be drawn for the layman. Basic stuff that we're all familiar with such as the initial incision, the steel wire in the chest, etc.
So if you've been curious about heart surgery but were afraid to ask, give this cartoony version a try. Its more educational than one might expect!
NOVA Online | Electric Heart | Operation: Heart Transplant (sw)
Thursday, August 19, 2004
The Heart of the Matter - Fiction
Okay, this is wierd. A short story, not fabulously written, revolving around a PCU nurse, a kid with HLHS, and his mom. Intersting in that I've *never* come across anything quite like this before. Even stranger is the slightly lesbianish romance novel tone the story takes. But it had to deal with HLHS, and there are some factual accuracies that make me think that perhaps this was written by a wannabe-writer heart mom.The Heart of the Matter
I don't mean to put the story or the writer down. Because even though the story proceeds as smoothly as a springtime highway in Alaska, at least the writer has done exactly that - written. Which is something, though I love to do it and am not horrible at, that I have not been able to make myself do.
More than once I've thought about the fact that no one writes about this and how it would make a good story. Of couse I always think my life would make a good story. It even comes with its own soundtrack.
But this story is worth reading if you can relate. The writer touches on some of the super-personal issues that you have to be a member of the club to understand. Heartening, but in another sense it brings to mind the famous quote (Groucho I think), "I wouldn't want to belong to any club that would have me as a member".
No shit.
Wednesday, August 18, 2004
Presentation by Charles Fraser
This is a real jewel. I found this by Googling, "Charles Fraser HLHS", and came up with a presentation complete with slides. So I'm thinking it would be a good idea to google other doc's by name and see what we come up with.
This is a presentation given (I think) at Baylor. Its quite interesting, not quite too over my head, and I learned a lot. Not just about HLHS, but a candid perpsective of the medical community, which is hard to come by; we parents get the toned-down idiot version most of the time.
This is complete with photos, some of them graphic. I'm a squeamish person and I found the pictures of surgery fascinating. So I highly endorse taking a look.BCM Online CME
Cardiovascular Genetics - Cardiac Phenotypes In Genetic Syndromes
A table listing genetic syndromes and associated cariac associations. HLHS corresponded with Jacobson and Rubinstein-Taybi syndromes. I know nothing yet of these syndromes but have plans to find out eventually.
Cardiovascular Genetics - Cardiac Phenotypes In Genetic Syndromes
HLHS conference in Colorado
I know this is just a flier, but I'd be really interested in digging up transcripts of the lectures. I included this as part of my 'food for thought' group.
532.pdf (application/pdf Object)
HLHS bibliography
In the future this might be worth digging through.
Virtual Children's Hospital: Surgery: Hypoplastic Left Heart Syndrome
Tuesday, August 17, 2004
Clinical Outcomes and Secondary Diagnoses for Infants Born With Hypoplastic Left Heart Syndrome -- Connor et al. 114 (2): e160 -- Pediatrics
Monday, August 16, 2004
CHIN: Support Groups
This is the most comprehensive list of CHD support groups that I've yet to find online. I've found it helpful to look at individual groups and their mission statements and charters, although many organization's websites either don't exist any longer or have obviously not been updated in years. Its a good primer for what works and what doesn't work. Interestingly, one idea that's been kicked around recently, phone cards for families of hospitalized children, was mentioned in an Ohio group's agenda.
CHIN: Support Groups
Friday, August 13, 2004
Hypoplastic Left Heart Syndrome and the Staged Norwood Procedure : Article by Richard G Ohye, MD
A very good, relatively up to date, article about HLHS. Discussed in the article is anatomy, treatment options, and outcomes. A good starting point. One of the first documents I've found that suggest that comfort care should no longer be offered as an option because success rates are improving so quickly.
eMedicine - Hypoplastic Left Heart Syndrome and the Staged Norwood Procedure : Article by Richard G Ohye, MD Coauthored by, among many others, Dr. Edward Bove.
Dartmouth Medical School - HLHS Outcome Research
This is an article about a pediatrician who is/was studying the outcomes in children with HLHS and the variables that factor into the outcomes. Seeing as research into this subject is rather scarce I was suprised to stumble upon it.
Dartmouth Medical School - Publications
Thursday, August 12, 2004
eMedicine - Hypoplastic Left Heart Syndrome and the Staged Norwood Procedure : Article by Richard G Ohye, MD
Yahoo! Groups : HopeforchildrenwithHLHS
This is a really good support group of parents of kids with HLHS. They are always glad to answer any questions and offer help in any way that they can.Yahoo! Groups : HopeforchildrenwithHLHS
Contributors
Previous Posts
- Journal Articles about Breastfeeding
- Survival After Reconstructive Surgery for Hypoplastic Left Heart Syndrome
- HLHS Three Stage Surgery
- Rare Muscle-Forming Cells Found in Newborn Hearts
- Regenerating cells in newborn hearts
- Norwood Operation
- University of Chicago Hospitals: Heart specialists team up to provide hybrid procedure for newborns
- Heart Matters - January 2002
- ScienceDirect - European Journal of Cardio-Thoracic Surgery : Right ventricle to pulmonary artery conduit has a favorable impact on postoperative phys
- Impact of Inspired Gas Mixtures on Preoperative Infants With Hypoplastic Left Heart Syndrome During Controlled Ventilation -- Tabbutt et al. 104 (Supp
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