A Broken Heart

35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Tuesday, June 7, 2011

semi-annual cardiology appointment

Yesterday, we went in to see the Dr. Wilson.  Here's the run down:

Weight: 27 # (20%ile)
Height: 87.8 cm (20ish %ile)
Head circumference: 49.5 cm
BP: 99/52
Heart Rate: 97

Status of all parts (both homegrown and replacement): no change from the last two echocardiograms (the best we could hope for).

What was different:

*Oliver did not have his oxygen saturations measured
*Oliver was hooked up to leads during his echocardiogram so that they could record a trace of the electrical activity of his heart at the same time they assessed the blood flow and structural integrity of his heart.  This was just because he is getting bigger and they felt he would not mind them/pull them off.
*Oliver's cardiologist noticed that Oliver is starting to outgrow the dosage of his one last drug...and he's going to let him keep outgrowing it.   Oliver may be off all meds by his birthday.  The doctor wants to make sure there aren't any bad things that go wrong in the next six months.  This one last medicine (enalapril) is an afterload reducer. From what I understand, it reduces the blood pressure in Oliver's blood vessels so his heart does not have to work so hard to push the blood through these vessels and out to his body. 
*The doctor said that Oliver should get antibiotics before he goes in to the dentist, just as a precaution.
*The doctor said that Oliver has passed through one stage of rapid growth (infancy) without any surgical interventions and now has entered a stage of steady growth.  The biggest strain on the heart comes during periods of rapid growth (infancy & adolescence).  So, the doctor said Oliver's heart parts show every sign of carrying him through until his next stage of rapid growth...  Which is a whole lot longer than I ever dreamed.  Of course, there is always the caveat that his one homegrown valve could suddenly start misbehaving or something else could go wrong.  But, I say, why invite trouble?

Saturday, June 4, 2011

Questions from a comment:

A reader posted these questions as a comment on an earlier post.  I'll answer from my experience, but if anyone else has more to add or something different to add, please do.

1. What is the possible earliest time when you can find out your baby is having TA?
2. What is the survival rate for people with TA ? I mean what is the average life span?
3. If I had a baby with TA, what are the chances for TA to repeat in my future pregnancies? Provided me and my partner are genetically doing good (we've got genetic test done). Is there any such rule that defines the possibilities of TA in a couple, or it just so random to predict whoz next ?

What I have learned/experienced/heard:
1. My son was diagnosed at 20 weeks gestation.  I don't know if it can be diagnosed earlier.
2. Survival rate: If you look at the header of my blog, 80% of babies who get operated on, survive their operation.  Average life span: I'm not sure.  Since the first surgical correction of TA was done in 1968 (I may have the dates wrong), we wouldn't have any people who were older than 43 right now...I"m aware of a 22-year-old--and there are others you can find on the yahoo group listed on the left side of my blog.  In fact, that might be a good place to re-post your questions.
3. If you have had one child with a congenital heart defect, it increases the odds that you will have another one--not by a huge amount--but some.  I'm not sure of the numbers.  I know of several people who have more than one child with a CHD--even though they got a clean genetic bill of health.  See: "you'd never guess" and "last roommate" in the blog list to the left.