Health

How New Born Screening Prevents Sickle Cell Disease

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Pain, the defining feature of sickle cell disease and its commonest symptom, starts early in life and persists throughout life. The pain is so bad that sometimes you can’t even think, breath, and you just want to die to end the agony.


Childbirth without drugs is not even close to what sickle cell pain feels like. Pain is the commonest symptom of sickle cell disease and is related to disease severity. In adults, large proportion of patients die during an acute episode of pain, making it a risk factor for early death along with acute chest syndrome and stroke.


Sickle cell anemia may not be as well-known as, say, malaria, tuberculosis or AIDS. But every year, thousands of babies in Uganda are born with this inherited blood disorder. In Uganda it’s estimated that about 33,000 babies are born every year with sickle cell. And the numbers are expected to rise if the trend is not checked.


Sickle cell disease (SCD) is one of the most common genetic causes of illness and death in the world. There is a higher rate of mortality among individuals with sickle cell and its estimated that about 9000 babies die annually due to sickle cell. Reports suggest that most children die before celebrating their fifth birthdays because they are undiagnosed, misdiagnosed or are untreated. 80 percent of the 33,000 babies born every year die below the age of five.


According to statistics it’s estimated that 25 percent of the 36 million Ugandans carry the sickle cell gene and are capable of passing the gene to their children. When it comes to passing on the gene to your offspring, it is crucial to know if you carry the trait, the defective gene that causes blood cells to lack hemoglobin, sickle and clog the vessels.


If both parents have the trait, there is a 25 percent chance the child will be born with sickle cell disease, 25 percent chance of having no sickle cell genes and 50 percent chance the child will be born with the trait only. It’s tricky, but knowing your status can help you in family planning.


It’s crucial for every person to know the genotype because it’s the first step to prevent another baby being born with sickle cell. But testing for genotype and mapping the sickle cell prevalence rate is still a challenge in Uganda.


On 18th February 2014 we had what may be a turning point in the history of sickle cell in Uganda. Cincinnati Children’s Hospital USA in conjunction with Uganda’s Ministry of Health launched a sickle cell lab at Central Public Health Laboratories Buganda Road, the lab is going to conduct a surveillance study to map the prevalence of sickle cell across the country for one year. It’s also expected to be used to carry out new born screening.


Countries that are on road to decrease the sickle cell spread and deaths formulated long term plans which I think we are on the right track.


Other countries

Bahrain a country of 1.3 million people started between 1984-1985 with neonatal screening which revealed that the birth prevalence of sickle cell disease was 2.1 percent, of sickle cell trait 11 percent. In 1984, the first genetics clinic was established and several educational campaigns were started.


In 1991, the Bahrain Hereditary Anemia Society was formed. In 1992, the Minister of Health formed a national committee for the prevention of genetic diseases in Bahrain. Screening of all pregnant women began, with testing of the newborn if the mother was found to be a carrier.

In 1993, a premarital counseling service was organized and then expanded to include all health centers. In the year 2004, the Bahrain Government passed a law requiring all couples planning to get married to undergo free premarital counseling. In 1998 the student screening project began, and the newborn screening program for blood diseases was launched in 2007. All these programs were accompanied by educational campaigns that aimed at increasing public awareness about sickle cell disease.


Thirty years now sickle cell deaths have reduced in Bahrain, last year the death toll was at 32 and every death the Ministry of Health has to account to Bahrainis.


This year only 11 deaths have occurred and the recent one occurred on 27th February. Jaffar Mohammed Al Durazi aged 23 a prison inmate was the 11th person to die with sickle cell. News of his death sparked protests in Daih, where his family lives and clashes with protest as the Bahrainis were requesting to know the cause of death.


We can achieve what Bahrain has achieved in the Sickle cell field by introducing new born screening for all babies born. The highest incidence of death occurs in the first 3 years of life. Identification of children at birth by newborn screening, and institution of preventative care can improve survival.

Patients who are identified at birth can be given counseling and advice about the course of illness. They can then be enrolled in comprehensive care programmes that provide prompt and effective care of acute events and prophylaxis against complications, resulting in overall positive impact on survival and quality of life.

Enrollment programmes


The identification of sickle cell disease at birth has to be accompanied by enrolment into programmes that provide comprehensive care by multidisciplinary teams comprising nurses, genetic counselors, social workers, pediatricians, hematologists, orthopedic surgeons, ophthalmologists, and internists.

These programmes can provide appropriate advice, counseling, and support to parents and affected individuals. This includes advice such as drinking adequate quantities of fluid to avoid dehydration and wearing warm clothing in cold weather.

Specific health education that can enable them to recognize acute events and seek medical care is also essential. Teaching mothers to recognize enlargement of the spleen and anaemia can be effective in diagnosing and treating anaemia. Patients are also seen on a regular basis and provided with folic acid supplements.


All the above can be achieved if the budget for health is increased. The government should increase health investment; the difference between life and death for millions of Ugandans.


Since we are still at the proportioning stage of the 2014/2015 financial year budget we pray that the health ministry is given enough money to recruit and train more health workers and procure more drugs.

The author is the Country Representative

African Sickle cell News and World Report Magazine – Nigeria

0779210960

Email: askamulale@gmail.com

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