Pregnant Women and HCV

Vol. 51 / No. 6 MMWR 119

the pregnancy to acquire formula. PKU was included in her

prenatal medical records, and she was referred to a maternal-

fetal specialist; however, her blood phe levels were not moni-

tored, and she was not referred to a metabolic clinic. Her

pregnancy resulted in an infant with microcephaly.

Case 3.

A woman aged 27 years remained on the PKU diet

throughout adulthood, planned her pregnancy, and had her

blood phe levels in control before conception. Her private

insurance covered part of her diet-related medical treatment

costs. She estimated that out-of-pocket expenses for the por-

tion of the metabolic clinic visits not paid by insurance were

$2,300 during her pregnancy. Her insurer denied coverage

for formula, low-protein foods, and blood tests to examine

her full amino acid profile. The metabolic clinic provided the

formula without reimbursement from the insurance company.

Her pregnancy resulted in a healthy infant.

Reported by:

PM Fernhoff, MD, R Singh, PhD, Div of Medical

Genetics, Dept of Pediatrics, Emory Univ School of Medicine, Atlanta,

Georgia. S Waisbren, PhD, F Rohr, MS, Children’s Hospital, Boston,

Massachusetts. DM Frazier, PhD, Div of Genetics and Metabolism,

Univ of North Carolina, Chapel Hill. SA Rasmussen, MD,

AA Kenneson, PhD, MA Honein, PhD, National Center on Birth

Defects and Developmental Disabilities; ML Gwinn, MD, Office of

Genetics and Disease Prevention, National Center for Environmental

Health; and AS Brown, PhD, JM Morris, PhD, P MacDonald, PhD,

EIS officers, CDC.

Editorial Note:

This report highlights some barriers that pre-

vent metabolic control of blood phe levels before pregnancy

among women with PKU. Two thirds of the women in this

study had not followed the diet before becoming pregnant.

This demonstrates limited adherence to prepregnancy medi-

cal recommendations among these women. Women also

reported limited confidence in obstetricians’ knowledge of

maternal PKU management and inconsistencies between

medical recommendations and health insurance coverage.

Following the lifelong diet also was complicated by the

unpleasant taste of medical foods

The findings in this report are subject to at least three limi-

tations. First, the sample size was small and consisted mostly

of women who received dietary management from metabolic

clinics during pregnancy. These women might have had

access to more resources or been more willing to adhere to

medical recommendations than women who had not received

such care. Second, at the time of the interviews, most of the

women were not following their diets; persons with PKU who

are not on the diet might have difficulties with concentration

and memory that could compromise the accuracy of their

responses. Third, the three clinics participating in this study

do not represent all U.S. metabolic clinics.

To improve pregnancy outcomes for women with PKU,

health-care providers should be trained to advise women to

plan their pregnancies, return to diet, and stay on the diet for

life. Additional evaluation is needed to ascertain the knowl-

edge needed by obstetricians to guide women with PKU; third-

party payers could identify disparities in financial assistance

available to pregnant women with PKU and determine the

most cost-effective approaches. Additional examination of

these barriers would allow public health programs to estab-

lish effective methods to reduce obstacles and improve preg-

nancy outcomes for women with PKU.