What is the Spina Bifida and Hydrocephalous Foundation all about?
We are working on an area that has remained neglected in the country. Children are born with congenital anomalies like Spina Bifida and Hydrocephalous. Children are born with these abnormalities quite often in the country. Yet, we don’t know so much about them. But I must add that as much as we are concerned about how to take care of such children, we also are committed to taking the campaign of prevention of such births especially to mothers. Like most issues of healthcare, the prevention of birth of children with birth defects is much cheaper and less cumbersome than caring for these children when they are born.
Would you say that the Nigerian health system has the wherewithal to indentify these children on time? Do you readily have statistics on the prevalence of babies born with defects?
Well, these children present defects that are immediately noticed. When a child is born with an abnormally large head, it is easy to clinically diagnose. The same thing for when parts of his/her brain is out or the spinal cord is exposed. There are no challenges in clinically diagnosing these babies. But we have less than 40 qualified neurosurgeons in a country of over 160 million. Due to lack of experience, many of our GPs (general practitioners) and doctors don’t know how to care for these children.
A case in question was about a child in a rural community whom a nurse used nylon to cover her back where her spinal cord was opened. But the right thing would have been for her to dress the wound and refer her to a more competent hospital. But we are working on creating a surveillance team to detect cases of birth defects in order for us to be able to give accurate data.
We are starting from Abuja because I am based here. But for neural tube defects like Spina Bifida, we expect 300,000 babies born with these defects globally. So far in Nigeria a facility based surveillance carried out in Jos and Lagos showed that about 3 to 7 children are born with congenital birth defects out of 1000 live births. And according to the 2013 National Demographic Survey, there are 8 babies out of 1000 live births are born with congenital birth defects.
Mothers just don’t know what to do about babies with birth defects. Be it in the prevention of such births or how to take care of these children. It is tough really because of the lifelong care some of them will need. Prevention is so important, because it very cheap, while managing children with birth defects is expensive and emotionally challenging. But it is sad that we still haven’t fully imbibed antenatal culture in Nigeria and antenatal care is very important to preventing the birth of babies with defects.
Sometimes women don’t even notice that they have become pregnant and the birth abnormalities occur in the first month of pregnancy. Worse still, many women including the educated ones only start going for antenatal when they are like four months gone. So the message from us is that once a women is of child bearing age, she should take a 4.0 milligram tablet of folic acid daily. We also are pushing for government to ensure that our staple foods are fortified with folic acid like the case of Vitamin A and Iodine fortification. By doing all of these we will greatly reduce in risk of delivering babies with birth defects. Then we must advice on the issue of lifestyle changes. Some women use drugs indiscriminately, others drink alcohol. Some have Sexually Transmitted Diseases they haven’t treated. Some are obese and diabetic, yet they may not take notice. So we want government to help in providing pre-pregnancy (conception) care in hospitals. The idea is that once a women feels she is ready to start having children or to add to one she already has, she can start attending these classes. During these sessions she would be properly diagnosed of things are inimical to the health of a foetus like diabetes and sexually transmitted diseases.
Please expatiate on the importance of folic acid for healthy babies?
Folic acid is a water soluble vitamin that should be taken once daily by women of child bearing age. It should be taken before pregnancy but it is sad that even the enlightened women don’t do this. The neural tube in a foetus closes by 28 days. So if a woman doesn’t have enough folic acid in her system, it will affect the child and the tube will not close, leaving the spinal cord open. And when this happens we have a child that cannot walk, control urine and faeces. We can take folic acid as a supplement or we use it to fortify our staple food. The use of folic acid not only stops congenital birth defects, it also prevents cleft lips and anaemia. To get 500 to 1000 tablets costs about N300. Now people ask if we have foods that are rich in folic acid like green vegetables, nuts and fruits. But you need to take 19 apples to have adequate daily amount of folic acid. We also lose folic acid to over cooking in some cases. But with tablets, you just need the tiny 0.4 milligram tablet once a day at any time of the day.
Are children with congenital anomalies witches or demons? Are they possessed beings that bring bad luck?
Children with congenital are born due to one error during or before conception like I have explained earlier. So having one child with birth defects doesn’t mean that the next baby will be the same. They don’t bring any bad luck. I have been attending to babies with birth defects for six years now and I have no cause for regret. I have children in these years and nothing has gone wrong. We owe them love and care. What makes me sad the most is that our people resort to using some of these children to beg for arms and practically enslave their parents. We also remember that having a child with birth defects is costly and emotionally demanding. Here in the FCT we have places where neurosurgeons can handle these special babies such as National Hospital Abuja and University of Abuja Teaching Hospital Gwagwalada.
How badly does alcohol intake increase risk factor for birth defects? And is age a factor?
Well, [beyond] age 35 women’s cells aren’t healthy as they were at age 35. So it is advisable for women to stop having children at this age. But you know that there are reasons why some women resort to having children at that age and above. Some don’t marry early, while others suffer delays in conceiving even when they married at a young age. Some widows need to remarry and age is a factor especially for babies born with heart defects. With regard to alcohol, we all know that mothers are advised not take alcohol during pregnancy. Alcohol is simply not good for babies in the womb and can lead to issues. So in a nutshell, we would like a situation where women of child bearing age avoid smoking, drinking and bad foods. We want women to take their health serious, we wish that they go for check up and be athletic. Work is not exercise, rather it is stress. So we should make out time to exercise.
How would you rate the ability of the Nigerian health system in managing babies born with defects?
I will just give us a 20% mark. A baby born with Spina Bifida or Hydrocephalus in Nigeria is most likely to suffer. They suffer discrimination from even their parents. You heard earlier today that a child born with congenital birth defects was abandoned by its parents. It’s a tough situation because parents feel that they have never seen a child like one born with defects, so they run away. Then the larger society too stigmatizes the baby. People don’t want to even carry them, they are afraid.
Coming to the hospitals, we don’t have enough hands to take of such special cases. Like I said, we have just 40 neurosurgeons, so you can imagine that the lucky ones among these children will have to wait for weeks before a surgeon gets to him. Then, they have to undergo expensive investigations like MRI and CT scans. How many people can afford this? If Nigeria has effectively made newborn care free then the babies will have better care. Even the basic commodities to manage these babies, like the shunt used for babies with hydrocephalus to divert excess fluids, is not readily available. And where it is, we have to make do with those made outside somewhere like Europe because they are cheaper. But these shunts don’t contain antibiotics like those made in places like Europe and this leads to the children returning to hospital again and again. Though there are so many competing issues, we hope that government can invest in pre-conception care and the management of babies born with defects
Like you mentioned, government has quite a number of things to allocate money to. Can you make a case for why it should invest in this special field?
It doesn’t cost much to invest in this area of medical care. We already have the basics which government can simply build on. For pre-conception care we can use parts of the hospitals where our antenatal classes are held. During preconception classes for young people especially women, they can be taught about nutrition, lifestyle choices like why alcohol shouldn’t be abused and even things like their genotype. We can talk to them about high BP and other things that make pregnancy a high risk. Yes, we can train more nurses and doctors to manage these babies or enlighten people as part of prevention. I am confident that with the introduction of preconception care, issues like SS babies, children with congenital birth defects will be greatly reduced. This saves parents and government a lot of resources. We will also reduce maternal and infant mortality. It would be most effective if we can locate such services in the primary health centres.
What is the Spina Bifida and Hydrocephalous Foundation all about?