PLEASE HELP
“Magadi was born in hospital and, soon after delivery, the doctors discovered that she has the Hydrocephalus condition, which causes the head to bulge due to fluids which accumulate in the head,” explains Kagiso, who is originally from Gumare.
Normally, these fluids work to protect the brain and spinal cord, with any excess liquid absorbed by the body.
Later, doctors realised the diagnosis was incorrect and not Hydrocephalus at all but rather Hydranencephaly, a condition with similar symptoms.
Both conditions, according to the Ministry of Health, are generally incurable but can be managed under palliative care (specialised medical care for people living with a serious illness).
However, Kagiso says doctors in government hospitals have told her they are powerless to save her precious grandchild, instructing the family to return home with her and wait for whatever God decides.
“The neurological surgeon said there is nothing they can do because the baby’s brain is too small. We were told to take our baby home and wait upon the Lord to decide her fate,” continues the grandmother.
She has since sought help from the Ombudsman in a last ditch attempt to get the government to assist the baby.
“They ended up booking us for check-up in April; where will the baby be by then? The fluids are accumulating and her head is growing. There are days when you notice that she really is in pain as her eyes are often teary.”
Amid her pain, Kagiso is angry, adamant government could do more.
“It did not make sense why they would discharge a baby to go home before surgery. If they do not have the means, they should have at least referred her to a private hospital, that is what government does in other cases. Our child’s life is equally precious!”
Recently, the young granny took Magadi to a local private clinic, where she was informed that with advanced health care, it is possible the baby’s life could be saved.
“We know it is possible for her condition to be treated, but that can only be done through expensive surgery at private hospitals. Obviously, it will take a lot of money, which we do not have. That is why we are making this plea. We cannot say the exact amount that we may need at the moment because we are yet to travel to Gaborone for appointment with the doctor. Only after consultation can we have the bill of cost, but we are not expecting any little sum of money!”
Frustrated as she watches helplessly while the child’s head expands a little every day, Kagiso strongly believes Magadi can still live a normal life if she gets surgery soon.
In the meantime, the Ministry of Health confirmed baby Magadi is their patient but would not be drawn into discussing her condition further.
Citing confidentiality rules, the Ministry’s Spokesperson, Christopher Nyanga, explained, “We are unable to comprehensively respond to your enquiry lest we find ourselves giving finer details of the patient, contrary to health worker/ patient confidentiality rules.”
Nyanga further assured The Voice they were not turning their back on the family.
“The ministry will continue to facilitate the family and give as much medical guidance and advice as may be necessary for them to care for the child.”
To help baby Magadi kindly contact The Voice on +267 77412352/+267 3161585
HYDRANENCEPHALY is a rare condition in which the brain’s cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid.
An infant’s head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem to be okay. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include: • Visual impairment • Lack of growth • Deafness • Blindness • Spastic quadriparesis (paralysis) • Intellectual deficits Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterised by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12th week of pregnancy.
Diagnosis may be delayed for several months because early behaviour appears to be relatively typical. Some infants may have additional abnormalities at birth including seizures, myoclonus (spasm or twitching of a muscle or group of muscles), and respiratory problems.
Sadly, the outlook for children with Hydranencephaly is poor. Most babies die before they are born or before they turn one year old. Rarely, a child with Hydranencephaly can survive for years with intensive supportive care.
(Source: National Institute of Neurological Disorders and Stroke)