A Broken Heart

Incidence:
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)
Treatment:
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)
Mortality:
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, September 22, 2015

anticipation

After small boy's troubling echo in April, his stress test in May and his MRI on June 1st, we didn't hear anything for a while.

Eventually, in July, I called to make sure he was o.k. to fly to visit family.

In August, I called again to ask what the treatment plan was--and learned that instead of surgery, small boy will just be having more frequent follow up visits with his cardiologist.

I still haven't seen a report on the MRI findings, but I figure they must have been reassuring since we are not scheduled to return to the cardiologist until late October.

In the meantime, he is enjoying first grade and his teacher is trying to find ways to help him productively channel all of his energy.

Once again, there will be no long range plans being made by this family--nothing beyond October 26.