Positive Developments for HLHS Babies

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complicated and serious congenital heart defects out there.  Treatment includes a series of surgeries, the first coming almost immediately after birth, called the Norwood procedure.  If this procedure fails, a transplant is necessary.  A new study shows hope for reducing the number of deaths and transplants needed in children born with HLHS.

The study, conducted at the Children's Hospital of Philadelphia, compared results between the traditional surgery - "a modified Blalock-Taussig (MBT) shunt, which carries blood from an artery branching off the aorta to the pulmonary artery" - and a new procedure - "he Sano procedure or the right ventricle-pulmonary artery (RVPA) shunt, links the right ventricle to the pulmonary artery".  The results were promising, with a 74% of infants with the RVPA shunt surviving and not needing transplant compared to only 64% of those receiving the traditional surgery.  These results are promising, although work needs to continue as the RVPA showed a higher rate of complications requiring "unintended interventions, such as needing stents or balloons to keep the shunt open."  But a 10% higher rate of survival without transplant is pretty promising.

For more information, you can read "In Infant Heart Surgery, Newer Technique Yields Better Survival in First Year of Life," at Forbes.com.

It Takes A Village

Well, as Oscar Wilde said, "It is always with the best of intentions that the worst work is done."  Or, in my case, no work is done.  Last week was really one that I would prefer to forget in many ways.  It was scheduled to the hilt and I had a lot on my list of things to do and ended up getting few to none of them done.  I didn't post daily as I was hoping to because I ended up with spotty internet at best for most of the week and just too many other things that I could not possibly put off doing.  So, this took a backseat.

I had a panic attack last night realizing that I have not slept well for the past week, have a to-do list the size of a small continent, and not much in the way of energy or time management to get that small continent taken care of.  But, I guess I'll just have to approach it with the "How do you eat an elephant?" strategy...answer...one bite at a time!

The picture up in the corner is Bean in her car seat at the Berkeley High School Speech and Debate tournament that I worked this weekend.  She is not usually this happy in her car seat, but the photographer caught her in a good mood!  It was a looooooong weekend.  I was at the tournament for between 13-15 hours each day on Saturday and Sunday and I'm still here plugging along today.  For those of you unfamiliar with Speech and Debate tournaments, they are like working a 40 hour work week in three days time - and it can definitely be painful.  Luckily Bean had a good sleeping weekend, with only one 4:30 a.m. wake-up this morning.  But, I'm still relatively exhausted and we have a three and a half hour drive back to Chico today at some point.  Ugh....

But, let me get to the title of today's post.  Although it also takes a village to run a Speech and Debate tournament...and in all honesty, I feel like it will take a village to get my life on schedule, I was referring to an article posted on the Congenital Heart Defect Support email list from the Star Tribune in Minnesota.  The article, A Kid-Sized Niche, is a great example of what can happen when people discover their passion.  I have discussed the "profitability gap" for pediatric medical devices on my previous blog, in "'Profitability Gap' Means Adult Treatment for Children", but I did not see the solution that Bradley Slaker saw in creating DesignWise Medical.  Slaker has created a "nonprofit pediatric medical device company" that collaborates with Universities, retired engineers, law students, and others to create solutions for pediatric medical problems.  The article says that Minnesota offers a unique environment with its identification as a "medical tech hotbed".  But, I think its great that Slaker has found a way to produce these devices without them having to be profitable, offering parents like me some hope for solutions that will work.  I also think its great that students at Universities are being involved in the creation, production and legal work involved in these devices.  Perhaps some of them will be inspired to continue in this area.

I am looking forward to starting a new week that will hopefully be better then last week.  I am not at all looking at an easier week this week, but at least I'm expecting the chaos that is sure to ensue and hoping to be able to deal with it a bit better then last week.