Monday, July 29, 2013

Some Statistics

  I've been doing a LOT of journal reading lately, trying to piece together the random bits and pieces of legitimate, hard scientific information that is out there. The information is so scattered and not even the perinatologist nor Dr. O could really give me any hard facts about continuing the pregnancy. I thought I would share some of what I have found out. My citations are horrible, I know.
 I found this journal article from what seems to be a reputable, peer-reviewed journal. It's not exactly a great study, but I found it interesting:

Abstract

Parents are usually told that many anencephalic offspring die in utero or soon after delivery, and many obstetricians offer elective termination of the pregnancy. Following the personal experience of the first author, a personal website was created with the intention of providing information and exchanging views with other parents confronted with a prenatal diagnosis of anencephaly. Data were collected from 211 pregnancies where the parents opted not to terminate pregnancy. These data revealed that polyhydramnios was a feature in 56 (26%) pregnancies, death in utero in 15 (7%) pregnancies, 72 (34%) babies were born prematurely (<37 weeks of gestation), 113 (53%) at term and 21 (10%) after 42 weeks. Stillbirth, presumably resulting from intrapartum death, occurred in 43 (20%) deliveries. One hundred and fifty-three (72%) of anencephalic offspring were liveborn, of those, 103 (67%) died within 24 hours but 6/211 survived 6 or more days (maximum 28 days). Continuation of pregnancy after a diagnosis of anencephaly is medically safe and should be considered as an option
Table 1.  Spontaneous outcome of 211 pregnancies after prenatal diagnosis of anencephaly (summary)
n%
Sex
Female12258
Male8942
Twins (one affected)2210
Triplets (one affected)1
Polyhydramnios5627
Death in utero (prenatal death)157
Gestation (weeks)
<377234
37–4211354
>422110
Not determined3
Delivery, caesarean section5526
Survival
Prenatal death157
Stillbirth (intrapartum death)4320
Liveborn15372
Death within
 Day 110349 (67% of liveborn)
 In first hour4119 (27% of liveborn)
 Second hour–24 hour6229 (40% of liveborn)
 Day 2–53918 (25% of liveborn)
 Day 6–952 (3% of liveborn)
 Day 10–2863 (4% of liveborn)
Jaquier, M., Klein, A. and Boltshauser, E. (2006), Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly. BJOG: An International Journal of Obstetrics & Gynaecology, 113: 951–953. doi: 10.1111/j.1471-0528.2006.01014.x
Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly Jaquier 2006 BJOG: An International Journal of Obstetrics & Gynaecology Wiley Online Library

 I also found an answer to a question that had been bugging me: Denali does not sleep. I kind of suspected that she didn't because her movements are so random, but I wasn't sure. Persons in a persistent vegetative state still have sleep/wake cycles, but anencephalic babies do not. I also thought that the article, although dated, had some pretty good evidence that her organs can be donated. We might need to be at a larger academic hospital for that to happen, but I'm still really interested in donating. I know a pediatrician here in town and I might ask her if she has any experience dealing with pediatric organ transplantation. And anencephaly in general.

The Infant with Anencephaly

The Medical Task Force on Anencephaly*
N Engl J Med 1990; 322:669-674March 8, 1990DOI: 10.1056/NEJM199003083221006

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