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)

Monday, February 22, 2010


Oliver has:
* two new teeth: the one-year old molars on his left side
*several words: bye-bye (with a wave), ah duh (with the sign for "all done"), ditz (with dancing arms and, sometimes, feet), mama (he's only said this one twice, but both times in context), and (the sign for more).
*his first word was "all done", which popped up last week.
*begun blindly reaching onto table tops
*He's also mastered the art of climbing onto our ottoman, then into the rocking chair to get the remote controls on our side table. This morning, I scooted the chair away from the side table, so instead of slobbering all over the remotes, he ended up doing a header onto the floor between the chair and the table.

hours of fun

Tuesday, February 16, 2010

Wednesday, February 10, 2010

Monday, February 1, 2010

does it get easier?

My friend just asked if I have found it getting "easier" as time goes by, being the parent of a child with a chd. Easier is the wrong word, she said, but she couldn't think of the right one.

Maybe the right was to say it is: I have become more easy with the situation.

In my mind, Oliver made the switch from a heart-baby to my snuggly boy quite a while ago.

As time has progressed, I've gained more and more confidence in his body's ability to do what it needs to do. It helps that he's had consistently good reports from his cardiologist and that he's hit his developmental milestones--sitting, walking, climbing--just a little behind his sister. Every day that goes by, my vigilance relaxes a bit more and my worries slip a bit further to the back of my mind. I even get surprised, sometimes, when I see the scars on his chest.

Of course, I still get thrown back when friends face the next stage of their journey. It reminds me that we will be there, too, someday. Pictures of other babies in right after their surgery, like the one shown on 60 Minutes last night, also discomfort me. But they don't send me off onto a 3-day crying jag.

I guess I've adapted and found my new normal.