uncomforting statistics

I just finished reading the book, "An Exact Replica of a Figment of my Imagination" by Elizabeth McCracken. The writer shares her story about delivering her first son, stillborn in France. She writes about her pregnancy, birth, and thoughts after. I loved her writing.

In one of the chapters she is already pregnant with her second child after losing her first and is in the OB office for a check-up. She is asked if she would like to have an amniocentesis done to check for any genetic abnormalities...

"I mean," I said to Dr. Knoeller, "we figured we might as well. I guess. I don't know. What do you think?"  

Well, she said, the real question was if we had the amnio, and the results were normal, but it was one of the one in two hundred pregnancies that miscarried after the procedure, how would we feel?  

We were stunned into silence, because of course that was the question. Even if you rephrased it--as Edward pointed out, one in two hundred sounds worse than one half of one percent because with the former you visualize acual people--we weren't willing to risk it. Once you've been on the losing side of great odds, you never find statistics comforting again.

And how true that is. Odds for the worst case scenario almost make us twinge now, because over and over that is what happened for Olive.

All of these statistics were based on studies done in America. Olive was born in Thailand, and had her initial treatment there at a less than ideal NICU. So I'm sure some of these statistics aren't completely valid for our specific scenario.

1) What percentage of premature babies are born between 28-31 weeks? 10% (1)

2) What are the odds that a baby born at 28 weeks will survive? 96%. That means Olive was in the 4% of babies that die. (1)

3) What are the odds that after giving a pre-term baby surfactant that they will have a pulmonary hemorrhage? 1.47%. Yup...that 1.47% was Olive. (3)

4) What is the percentage of pre-term babies who have level four brain hemorrhages? "The incident of grade III or IV IVH (intraventricular hemorrhage) is only 2% of infants born AFTER 25 weeks."  (2) We were told that it  has been years since the NICU in Chiang Rai, Bangkok, or even in the States had seen a brain hemorrhage as severe as Olive's.

5) What are the odds that a baby will get meningitis two days before an international evacuation? Hard to find the answer to this one, but I'm guessing its probably in the very small rarely ever happens range.

6) What are the odds that a Thai opthamologist will stop in the middle of laser eye surgery due to a power outage and not go back and finish the job? Not sure, but I would guess and hope they are low.

7) What is the percentage that a shunt will break? 1.01% according to one study (5)

8) And are the odds that a child will contract an infection from a VP shunt? According to one study in 2006, I found that the risk is about 3.98% (4).

9) What are the odds that your baby will be buried on a plot that has already been sold to another individual, and that she will need to be dug up, and reburied? Yup, that's right. Unbelievable. Pretty sure the risk of that is low, but sweet little Olive can't even get a break after she dies. My parents are going to be there when this happens to make sure the young amish teenager who will be digging is gentle, careful, and respectful with her coffin. Neither Rusty or I wanted to be there...just makes me feel strange inside.


So all this to say, while some people rest in the comfort of statistics being on their side, I am now rather fearful of even those little eency weensy 1% risks that once felt reassuring. 

References:

(1) http://www.marchofdimes.com/professionals/14332_1157.asp

(2)http://books.google.com/booksid=pM1l6cQBT7oC&pg=PA203&lpg=PA203&dq=what+percentage+of+preemies+have+hydrocephalus&source=bl&ots=91KviDux00&sig=l0MyClZjCnWJS54q3psoht7ZVN0&hl=en&ei=AKL8S7Qikfgx1qOZ3wc&sa=X&oi=book_result&ct=result&resnum=5&ved=0CCcQ6AEwBA#v=onepage&q&f=false

(3) http://www.cps.ca/english/statements/FN/fn05-01.htm#risks

(4) http://www.bioline.org.br/pdf?mb06010

(5) http://www.springerlink.com/content/hl3760h335325001/

(6) http://www.nichd.nih.gov/womenshealth/research/pregbirth/preterm.cfm