At Patan Hospital two weeks ago, an unborn baby of 20 weeks was diagnosed with cystic hygroma, a birth defect that usually appears as a sac-like structure in the head and neck area of an infant.

Doctors attending on the pregnant woman told her about the condition of the baby and asked her to decide whether she wanted to continue with the pregnancy.

“As per the decision of parents, we give medications to induce labour,” said Dr Pawan Sharma, rector at the Patan Academy of Health Sciences. “Chances of survival are very slim in such cases, but if infants survive, a surgery is needed to remove the sac-like structure.”

Cystic hygroma is one among several birth defects that have contributed to neonatal deaths in Nepal. Hypothermia, infection, low birth weight, premature birth, and abnormal birth asphyxia are among the other leading causes of neonatal deaths.

Likewise, heart defects, neural tube defects, downs syndrome, cleft lip, and cleft palate are the common birth defects that can be prevented. Risks of such conditions can be mitigated if the problems are identified at an early stage, say doctors.

But due to a lack of trained human resources in the rural settings that can identify the risk conditions, many infants are born with defects, which is one of the key reasons for high neonatal deaths in Nepal. The Health Ministry does not keep a record of the deaths of all infants, as their numbers are very high, officials said.

“To lessen the ongoing neonatal death rate, we are providing screening training to the doctors—paediatricians, gynaecologists and radiologists—of 27 federal and provincial hospitals throughout the country,” said Nisha Joshi, a senior public health officer at the Family Welfare Division, under the Department of Health Services.

“Health workers serving in those hospitals will refer the newborn babies to the hospitals having expert care, which will ultimately help lessen complications and neonatal deaths.”

The World Health Organisation has also recommended that countries develop and strengthen registration and surveillance systems for prevention of birth defects and the care of children affected. Similarly, the UN health body also recommended raising awareness about the importance of newborn screening programmes and their role in identifying infants born with congenital birth defects.

To lower child mortality, the Health Ministry has been running programmes on newborn care such as kangaroo care, exclusive breastfeeding, infection prevention, chlorhexidine for umbilical cord care, and free neonatal care.

"We have launched several programmes to curb neonatal deaths, including distribution of folic acid, to prevent birth defects," said Joshi.

The National Demographic Health Survey 2016 showed that 21 babies in every 1,000 live births die within a month. The country has to reduce neonatal deaths to 12 by 2030 to meet the Sustainable Development Goal target.

Child health experts, as well as officials at the Ministry of Health and Population, concede that it is very difficult to meet the target within the given deadline, as the death rate of infants is not declining accordingly.

They also concede that death numbers could be much higher as there is no mechanism in place to count deaths of newborn babies and the mothers at home or those outside the health facilities.

“Number of childs with birth defects and deaths can be lessened if the problems are identified at an early stage and are referred to the expert care centre on time,” said Dr Yuba Nidhi Basaula, director at Kanti Children’s Hospital. “Health workers from across the country refer to the hospital infants having birth defects or health complications, but all those serving in remote places may not have the knowledge to identify the problems on time which increases the risk of deaths and abnormalities.”

Meanwhile, the Health Ministry said it has expanded verbal autopsy in 42 districts throughout the country to find the cause of mother and child deaths. Earlier, the programme was being implemented only in 32 districts.

Verbal Autopsy, usually called VA, is a method of determining individuals’ causes of death.

Even as Nepal strives to reduce the deaths of mothers and babies, it lacks maternal and perinatal death surveillance, a key to improving maternal, perinatal, and neonatal survivals. Such surveillance provides an understanding for the number and causes of deaths.

According to the World Health Organisation, systematic analyses of overall mortality trends as well as events, the contributing factors leading to individual deaths, can identify health system barriers and inspire local solutions to prevent such deaths in the future.

Perinatal death is a term used to define the death of a baby between 22 weeks of gestation and seven days after birth.