The social economic and family background of the child with a CNS birth defect in a developing country in the current era.html

Niger J Paed 2015; 42 (1): 55 - 58

ORIGINAL

Joel-Medewase VI

The social-economic and family

Adeleye AO

background of the child with a

CNS birth defect in a developing

country in the current era

DOI:http://dx.doi.org/10.4314/njp.v42i1,12

Accepted: 4th November 2014

Abstract: Objectives: In much

young adults, but the mean age of

older

literature

many

socio-

the fathers, 35.8years, was higher

Adeleye AO

(

)

cultural factors militating against

than the mothers’, 30.0years,

Department of Neurological Surgery

the optimal clinical / surgical care

p-value<0.001; the parents had

University College Hospital, UCH

of CNS birth defects in the low-

low level of education and socio-

PMB 5116, Ibadan, 200001

Nigeria

middle income countries (LMICs)

economic statuses; more than 90%

Email: femdoy@yahoo.com

were reported. We set out to inter-

had no knowledge about any pre-

rogate this phenomenon in the

ventive measures for CNS birth

Joel-Medewase VI

current era

defects; and, in spite of their

Department of Paediatrics and Child

Methods: A retrospective cross-

already sizeable families each,

Health, Ladoke Akintola University of

sectional survey of a prospective

56% of mothers, and 62% of the

Technology, Ogbomoso,

data-base of the social-economic

fathers were still gearing up for

LAUTECH Teaching Hospital,

and family background of the

further pregnancies.

Ogbomoso, Nigeria

children with CNS birth defects

Conclusions: Coupled with the

presenting for surgical care in a

region’s well-known harsh health

busy neurosurgical practice in

system, the socio-economic and

Nigeria.

family background of the child

Results: There were 151 children,

with CNS birth defects remain

81 males (53.6%), with hydro-

very challenging indeed in this

cephalus and neural tube closure

typical developing country. This

defects (NTDs) seen in the study

calls for concerted efforts to pro-

period; median age at presentation

mote in the LMICs the adoption of

was at 4 weeks of life, the NTDs

the established measures of

presenting much earlier than hy-

preventing CNS birth defects.

drocephalus, p-value< 0.001; each

child represented the first of the

Key words: CNS birth defects;

parents in about a third of cases,

social-economic,

family

back-

and at least the 3rd or higher birth

ground; low-middle income

order in 40.4%. The parents were

countries.

Introduction

private financing of health care ratio, again, in Nigeria

for instance is currently 31/69 .

Central nervous system (CNS) birth defects are among

the few systemic congenital anomalies compatible with

It is into this family socio-economic milieu that the child

life. They have a high prevalence in the low-middle in-

with the CNS birth defect arrives, and is presented for

come countries, LMICs, otherwise known as the devel-

neurosurgical care in our practice.

oping countries of the world. For instance, some 30% of

This study was carried out to objectively characterize

neonatal deaths related to visible congenital anomalies

this family background. It is hoped that this exercise

in the LMICs are CNS birth defects . But the cost of

would help cast in bold relief the relevant socio-

their immediate postnatal medical care and

surgical

economic factors impacting the clinical / neurosurgical

treatment is very staggering indeed . Even more so is the

care of these major health needs in this setting.

cost of their life-long care . In the LMICs, a very size-

3-5

able proportion of the population lives below the na-

tional poverty line. This proportion is at least 46% in

Nigeria . Furthermore, the health system of much of the

Materials and Methods

LMICs is privately funded in most places, meaning that

the individuals pay out of pocket for all aspects of health

This was a retrospective descriptive analysis of a pro-

care at the points of the service. The government /

spective data base of all the cases of CNS birth defects

seen in the neurosurgeon’s practice over the duration of

Table 1: Types of CNS birth defects

four years: from May 2009 till June 2013. . The neuro-

Variables, n-151

No (%)

p-value

surgical unit of the principal author’s, a 4-faculty prac-

The CNS anomalies

tice, is arguably the busiest in the country. The relevant

Craniospinal dysraphism

101 (66.9)

data were continuously captured prospectively in clini-

Spina bifida

cal summary forms and an electronic spreadsheet. Infor-

Encephalocoele

Hyrocephalus

50 (33.1)

mation in each proforma usually consisted of the clinical

Median age at neurosurgical presentation

presentation, the neurosurgical in-hospital course, post-

Craniospinal dysraphism

14 days

admission outpatient follow-up of each child, and some

Hydrocephalus

120 days

< 0.001*

socio-demographic data on each child’s mother and fa-

Number of Children in the family

Range

1-11

ther. Both parents were usually interviewed together

Median

except when one of them was not available. In that case,

Child’s birth order

as much information as possible about the absent parent

First

51 (33.8)

was obtained from the one present.

Second or third

67 (44.4)

Fourth or higher

33 (21.8)

For this study the specific information extracted from

this data-base included (i) the types of the CNS anoma-

Mann-Whitney U test

lies seen in the children; the age at presentation for neu-

rosurgical care; the number of children in each patient’s

Fig 1a

respective families, and the child’s birth order, and (ii)

the ages of the parents, and their respective socio-

economic levels, including the maximum formal educa-

tional attainments. The parents were also surveyed on

their prior knowledge of preventive measures for CNS

birth defects. Finally their opinions were sampled about

their readiness or otherwise to try to get pregnant again

after the index child with the CNS birth defect

Mothers age in years

This data-base was analysed using the SPSS version 18

(SPSS, Inc, IL). Descriptive data are presented in fre-

Fig 1b

quencies / proportions, means (±standard deviations,

SD) and medians. Tests of associations were performed

for categorical variables using the Pearson’s Chi-square

(or Fisher’s exact) test; with one-sample t-test for the

continuous, normal-distribution variable regarding the

mean ages of the fathers and mothers; and with the Wil-

coxon Mann-Whitney U test for non-parametric variable

with skewed distribution. The level of statistical signifi-

cance was set at an alpha level of < 0.05.

Fathers age in years

Table 2 shows some of the relevant socio- demographic

Results

details of the parents of the study subjects. Both parents

were essentially young persons in the majority, figure 1,

One hundred and fifty one children with CNS birth de-

although the fathers were significantly the older of the

fects were evaluated in this study period, table 1. There

two: mean fathers’ age 35.8 (±6.61)years, range 25-60,

were 81 males (53.6%) and 70 females (46.4%), male:

median 35.0; and the mothers, 30.0 (±4.82)years, range

female ratio 1.2: 1.

17-46, median 30.0, p < 0.001. In the vast majority of

The ages at presentation for neurosurgical attention

them, 96.7%, the mothers either lived on low income

ranged from day 1 to 5110, mean 198.9 median 28.0

(traders, artisans, low-earning civil servants) or had no

days; or stated in weeks, 1-728 weeks, mean 23.5, me-

personal source of income whatsoever: housewives,

dian 4.0. Further analysis showed that only 38 (25.2%)

students, unemployed and so on. The fathers, though

cases presented within the first week of life; or 24

with a significantly higher proportion of high income

(15.9%) within 72 hours of birth; and only 7 cases

level, p-value < 0.001, still were also of the nil / low

(4.6%) on the day of birth. About two-thirds were neural

income status in 85%. These parents also both had only

tube closure defects, NTDs; the rest were cases of hy-

basic literacy education in more than 50% each.

drocephalus. The median time to neurosurgical attention

There was no prior family history of a child with a CNS

of the NTDs was very significantly much shorter than

birth defect in any of the cases; and both of the parents

the cases with hydrocephalus; p < 0.001 (Mann Whitney

in the majority, >90% each, had no prior knowledge of

U, 1166.00; Wilcoxon W, 4736.00; z = -6.24). The me-

any preventive measures for CNS birth defects. About

dian number of children in the families concerned was 2,

56% of the mothers, and 62% of the fathers, would still

range 1-11. At least one-third of this cohort represented

try to achieve further conception after taking care of the

the very first child of the respective family; 61 cases

current child with the birth defect. This difference was

(40.4%) represented the 3rd or more child of the family.

not statistically significant.

Table 2: Socio-demographic characteristics of the parents of

impoverished members of the population. The immedi-

this cohort of children with CNS birth defects

ate postnatal medical care, and surgical corrections, of

Variable

Mothers

Fathers

p-value

these defects can be very complex indeed, needing well

Mean age of parents

30.00

35.75

<0.001*

(years)

funded, cutting-edge medical practice, yet the reverse is

the reality of the health systems of much of the LMICs .

Parents’ income level

Mothers n-151

Fathers n-150

Here, the health system as a whole is a very harsh one

No income

29 (19.2)

8 (5.3)

Low income

117 (77.5)

120 (80.0)

indeed. It is essentially unorganized, able to sustain only

High income

05 (3.3)

22 (14.7)

<0.001**

elementary health care at best, and is poorly funded by

the government. Thus private funding of health care in

Parents’ educational attain-

Mothers n-151

Fathers, n-142

ment

these regions averages 70% to the government’s 30%, a

Primary school or less

19 (12.6)

11 (7.7)

complete reversal of the private /government funding

Secondary school

62 (41.1)

61 (43.0)

Tertiary school

70 (46.6)

70 (49.3)

0.39**

ratio of health care in the advanced countries of the

world . It has been observed actually that the out-of-

Prior knowledge about

preventive measures

Mothers n-149

Fathers n-109

pocket, point-of-service payment for basic health care

Yes

13 (8.7)

9 (8.3)

needs drive some 250 million people yearly to extreme

poverty and severe financial hardships in the LMICs .

136 (91.3)

100 (91.7)

0.89**

Attitude to further preg-

Mothers n-151

Fathers n-110

nancy

Many more psychosocial problems are also known to

Afraid / no more preg-

67 (44.4)

42 (38.2)

attend the presence of a child with CNS birth defect in a

nancy

84 (55.6)

68 (61.8)

0.32**

family

13,15,16

Want future pregnancy

. To the detriment of the other children in

the family the whole parental financial and loving atten-

tion, at home and for hospital attendance, may be de-

*One-sample t-test

voted to the affected child

12,13,17

**Pearson’s Chi Square test

. Parents may experience

great anguish and, in some occasions, even feelings of

personal guilt for the sufferings, real and imagined, of

the affected child. Finally, occasional squabbles, and

Discussion

family breakups, can occur

18,19

Thus the usual story of CNS birth defects in LMICs is

This study is a descriptive cross-sectional one briefly

usually that of late neurosurgical presentation, some-

surveying the salient social-economic milieu, in the cur-

times following an initial search for ‘cheaper’ alternative

rent era, of the typical family of the child with a CNS

medicine care; suboptimal in-hospital medical and neu-

birth defect in a developing country. The findings of this

rosurgical care, and an in-adequate / non-existing long-

term organized rehabilitative care

10,20-22

study corroborate, even consolidate, some of the hard

facts on this issue only alluded to in some previous stud-

ies

8-11

. It shows that the birth prevalence of CNS con-

This study also reveals one more sobering paradoxical

genital anomalies is far from abating in this country; that

point. This is the fact that, in much of the LMICs, the

the family milieu, ditto the health systems, to which the

hope of any short-term reduction in the birth prevalence

children with these defects are born is one that is actu-

of CNS birth defects may be a tall one indeed. For al-

ally ill-positioned to offer them the dedicated, capital-

though the children affected with these devastating

intensive immediate and long-term social-medical care

anomalies arrived in poor, peasant families who already

needed

12,13

. Majority of the parents earned low income,

had more than two children in more than 40% of the

or nil whatsoever; had only low-level educational attain-

cases, a significant proportion of the concerned parents

ment, and already had sizeable families each . It would

were still gearing up for more future conceptions. The

be imagined, for practical purposes, that it could only be

risks of recurrence of NTDs, for instance, are about 10-

30 times the general population . And these defects are,

hard struggle indeed for a poor family already with 1 or

to start with, diseases of the poor as a matter of fact

1,24

2 children to be saddled with an additional healthy child,

not to talk of one with a CNS birth defect.

In addition, more than 90% of the parents of the children

in this study actually showed no evidence of any knowl-

Congenital anomalies of the CNS are among the few

edge of the preventive measures for the CNS birth

birth defects that are compatible with life. They are

defects. There is therefore a great need for renewed

however more devastating than the rest of the birth de-

efforts at primary prevention of CNS birth defects in the

fects in many ways. The cost of their immediate postna-

developing country. The issue of responsible family size

tal medical care and surgical corrections can be very

and spacing should also be addressed.

staggering indeed, even for the well-endowed health

systems . And that is usually just the beginning of the

story. The life-long social, economic, and even per-

sonal / family burdens, associated with living with them

Conclusions

are simply unquantifiable

3,4,13

Here, therefore, are some of the paradoxes of the fact of

Just as in the earlier, much dated literature on the subject

CNS birth defects in the LMICs. They are a disease

from the region, the socio-economic and family back-

which even the rich families cannot easily afford the

ground of the child with a CNS birth defect in Nigeria

remains very challenging indeed

9,11,12,21,25

care of, yet they affect in the main the struggling,

. The health

system is harsh. The parents are young and poor; already

Authors’ contributions

have sizeable families and, lack knowledge of the meas-

Each author made substantial contributions towards the

ures for preventing these devastating birth defects.

conception, data gathering and analysis, manuscript

drafts, and final approval for submission for publication

please.

Conflict of interest: None

Funding: None

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