Striking doctors. Nurses on a go-slow. Patients sharing beds and beddings. Health equipment in crutches. Successive governments steeped in lethargy and arrogance. Expensive medical supplies as well as astronomical surgical fees. Such adjectives cannot inspire much promise if they are what one can find to describe a health sector. But that is exactly the case for Kenya’s health sector, which continues to dangle precariously between hopeful promise and total collapse. But Kenya’s case is not all gloom, to be fair to the level of incompetence that hogs our health sector boardrooms. Her Excellency The First Lady, Margaret Kenyatta, has catapulted the health sector into the national and global limelight with her #BeyondZero campaign. Beyond Zero is about promoting maternal health throughout Kenya which would translate to lower infant mortality.
Maternal health is very critical to the well being of both mother and child. The periods prior to conception, to the time of conception and the succeeding months can determine whether a woman would bring forth a healthy baby, or a child imbued with health complications and financial burden.
Kenya is grappling with myriads of health-related cases every single day. Cancer has become a ubiquitous thorn in the flesh in our medical parlance. Diabetes is increasingly becoming commonplace and diseases such as cholera and dysentery have an almost assured presence in our midst. When these kinds of ailments are what one has to deal with on an almost daily basis, then conditions such as spina bifida and hydrocephalus are wont to take a back seat.
Spina bifida is a congenital condition that affects the spine, causing it not to close completely. This happens within the first 28 days of pregnancy. Doctors and researchers have posited that spina bifida comes about due to lack of enough folic acid in the system. If that happens, then spina bifida for the foetus is almost inevitable. There are not many reported cases of spina bifida or hydrocephalus. Bethany Kids, a paediatric unit based at Kijabe Hospital, reported 1893 cases of hydrocephalus and 1032 cases of spina bifida between 2004 and 2008. The cases could be more, especially if such conditions occur in far flung areas such as Mandera, Garissa or even Lamu. But why is it that there is only a few thousand cases reported of this condition? Could it be that Kenya mothers are generally healthy during pregnancy? Or are we witnessing a reduction in the number of children borne with this congenital defect? There could be a number of reasons as to why there is only a handful of cases reported of this birth defect.
Lack of Information
“In Kenya no data exist on countrywide prevalence due to high mortality rate, infanticide in rural communities, and the concealment of children with the disabilities. The data available demonstrate a steady rise in the number of cases treated each year. This may be attributed to increased awareness of the diseases and treatment options.” ~ Johanna Christensen.
When one of my twin sons was borne and we discovered he had spina bifida, we were at loss as to why this would happen. Pre-natal visits had indicated that he had a swollen forehead (indications of hydrocephalus) but nothing had prepared us for what was to come. At Aga Khan Hospital, in Kisumu, the paediatric surgeon informed us that the boy had spina bifida (myelomeningocele) and that we needed to give the boy 6 months for the back to heal before surgery could be considered. The good surgeon insisted that nothing could be done at that state. He also informed us that after 6 months, the boy would undergo shunting, an invasive surgical procedure that has a pipe-like device inserted under the skin running from the brain and terminating into the abdomen to drain excessive cerebro-spinal fluid (CSF). He informed us that the “wound” would have to be dressed every alternate day for the next 6 months. Over the next few days, as I internalized the magnitude of what I was facing, and the realization that one of my boys had a birth defect that would render him disabled, I decided that I needed to gather as much information as possible. Thanks to google and the internet, I spent countless hours scouring internet pages reading about the condition and treatment procedures. I suddenly felt like an authority in the field of this kind of birth defect. One thing kept coming up though: that this defect was treated as an emergency and kids born with spina bifida and hydrocephalus had to go through emergency surgical treatment. Other hospitals in the developed countries performed emergency surgical procedure in utero (inside the womb). Faced with a local paediatric authority talking about one thing, and online articles advising another, I decided to seek a second opinion – from the country’s best neurosurgeon. His verdict was the same. Surgery after 2 weeks – shunting first, and then closing the protruding spine later. I was not convinced, for online articles had indicated that there were ground-breaking technology in this field that were minimally invasive while at the same time boasting high success rates.
This experience alone revealed to me that when a patient or care-giver lacks information, they will jump at the first opinion. They will be more convinced if it is an authority. In my conversations with people who had gone through similar situations, I got to learn that thousands who went to Kenyatta had to wait up to six months before they could get a surgical ward. Perhaps by this time, they would have given up altogether, or their kids having passed on to the after world. The situation is also not helped by doctors out for a kill, who will not volunteer any useful information that would help such patients receive the best medical care at minimal costs.
During our stay in Uganda, as the boy awaited his date with the surgeon, we were subjected to endless counselling sessions with a social worker and a chaplain. What came out of these interactions was that many parents suffered stigma as a result of bringing forth children with congenital spina bifida. There were reported cases of husbands neglecting their families altogether, or chasing away mother and child. Certain tribes in Eastern Uganda treated this as a curse and had to kill the child to avert further calamities. Johanna Christensen, in her journal, Marginalization & Stigmatization: Spina Bifida & Hydrocephalus, writes about families in the coastal region of Kenya who hide their children suffering from hydrocephalus. She reveals in her article how some husbands refuse to provide money for treatment, or run away from home altogether. The study reveals how kids who suffer this condition face stigma and ridicule from their peers, especially if they have to deal with incontinence. My conversations with the social worker also brought about issues of witchcraft. The good lady kept asking me if I thought my son was cursed, or somebody from my village had bewitched him. All these issues point to a society that feel ostracized when faced with these kind of social problems. Dr. David Chapman, who reviewed 164 cases of spina bifida in Durban, South Africa, wrote:
“The baby is a source of exceptional anxiety for the parents. How are they to manage the sac, ulcerated, weeping cerebrospinal fluid, and likely to rupture? They are constantly reminded of their guilt. The burden is heavy. One parent may reject the child while the other shows special love. The outcome of treatment involves the clinician in complex moral and ethical tangles.”
My visit to Uganda exposed me to the kind of social class that has to bear the biggest brunt of spina bifida and hydrocephalus. I increasingly saw pictures of poor rural women and absentee husbands. I was one of the few husbands who accompanied their wives to seek medical treatment for their kids. This could point to a few issues. Either, the family could be in dire financial constraints, that they have to trade off the little there is, with both parents going to the hospital. It could also be that the husbands are just plain stubborn. In Kijabe’s Bethany Hospital, many people who come for treatment, from all over the country, are families of modest means. That is not to say that spina bifida is a poor man’s condition. But there are indications that those who cannot afford folic acid supplements during pregnancy face the biggest risk of bearing children with the condition.
It is also possible that few cases are reported because families with modest financial means cannot afford medical attention. Others who believe that their children are under a curse seek the opinion of traditional healers or “waganga”. All these factors combine to deny the country much needed information on the condition.
In conclusion, lack of information is driving families to make uninformed choices and costly mistakes. Lack of medical know-how is causing families lots of trauma when they have to see their children under-go multiple surgical procedures to correct this and that. Through my internet research, I discovered that hydrocephalus could be treated through a minimally invasive procedure called Endoscopic Third Ventriculostomy or ETV, with choroid plexus cauterization. I also discovered that no hospital did this best other than Cure Children’s Hospital in Mbale Uganda. Kijabe’s Bethany Children also conducted the procedure, but at a limited level. Many close associates could not understand how I would leave Kenya, a country at a higher economic level than Uganda, and go and seek treatment there. But if there were other hospitals that performed this ground-breaking surgical procedure in the country, the information was just not there. And this is best captured by Dr. M Miles when he writes:
“In his major survey of African neurosurgery, Adeloye (1989) made no direct mention of third ventriculostomy; but in 2001 he discusses recent improvements in neuroendoscopic technology which might suggest that third ventriculostomy for hydrocephalus could have a revival in East Africa, fifty years after Jarvis’s reports of it in Nairobi, but now with vastly more effective instruments, technique and an evidence-based theory of ventricular functioning.”
Note: This blog has been inspired by the challenges I have gone through as a parent raising a son born with the congenital defect Spina Bifida and Hydrocephalus.