Vuyokazi Mtungwa (18 Months) was diagnosed with congenital heart disease
(CHD) after birth, she also has a genetic condition called Down Syndrome (DS) at
Inkosi Albert Luthuli Central Hospital.
Doctors told her parents that she had these diseases and she was expected to
finish her treatment 15 months after she was diagnosed at Inkosi Albert Luthuli
Central Hospital.
To receive her medication, she was transferred to the nearest hospital at Ekombe
Hospital where she was supposed to collect her treatment but surprisingly when
her parents went to Ekombe Hospital to collect her medication, the medication
was not enough and when they asked the health Pretensioner, they were told
that they do not have enough medication for Vuyokazi and requested her mother
to live her cell phone number so that they would call her when the treatment
arrive but they did not call.
“I was worried sick about my child; I didn’t know what to do when her mother
told me that at Ekombe Hospital they refused to give her medication. Almost
three months passed my child not receiving the right treatment. As a concerned
father, I told my fiancée to take our child to another hospital because at Ekombe
Hospital we were not receiving any help instead, we were told that my child’s file
was closed.
I’ve asked myself why they closed a file. What was the reason behind that? But I
did not get an answer,” said Thembinkosi Ntuli, Vuyikazi’s father.
Ntuli says after he saw that his daughter was suffering due to not receiving
enough medication, and the disease that she has is sensitive, he decided to invite
VM Radio to intervene.
According to National Library of Medicine (NLM) manuscript, congenital heart
disease (CHD) is frequently described in patients with Down syndrome (DS) and is
the main cause of death in this population during the first two years of life. The
spectrum of CHD patterns in DS varies widely worldwide; this variation could be
due to sociodemographic, genetic and geographic factors.
NLM says, approximately 50% of newborns with Down syndrome have
congenital heart disease. Nevertheless, careful planning for cardiac
surgery is required, evaluating for both cardiac and non-cardiac disease,
with careful consideration of the risk for pulmonary hypertension.
VM Radio spoke with the Spokesperson for the KZN Department of Health
Ntokozo Maphisa regarding the issue which was disturbing Ntuli and his fiancée.
Maphisa said, that according to information that was handed to them by facility
management, the patient has been receiving medication accordingly. He said the
misunderstanding was because the medication that was obtained from Inkosi
Albert Luthuli Central Hospital was in syrup form; whereas at Ekombe Hospital it
was in tablet form.
Ntuli said that was not communicated to them as the child’s parents as they were
expecting the syrup medication as well that the child was receiving at Inkosi
Albert Luthuli Central Hospital.
“If we were told we would have known. We were not going to even escalate this
matter to the media.”
NLM says, cardiac surgery and preoperative care of the patient with DS
and CHD has progressed significantly in the past 50 years. Future
advancements will likely involve improved pulmonary hypertension
management, greater understanding of heart transplant in patients with
DS, development of better medical and surgical management of single
ventricles, and enhanced coordination of care for these complex patients.
Maphisa mentioned that the tablets which are now given to a child by Ekombe
Hospital are crushed and mixed with water so that they can be consumed by the
young patient. There is evidence to the effect that Ekombe Hospital never ran out
of this medication.
He further explained that upon receiving the media inquiry from Health-e News
the CEO of Ekombe Hospital accompanied by another staff member went to the
Vilakazi family and explained everything to them that they have nothing to worry
about.
“I am now relieved since my little girl is going to receive her full medication from
Ekombe Hospital,” Ntuli adds.
“The hospital will continue to provide the medication and have enough supplies
to last for the foreseeable future.
We urge all our healthcare users, patients and the next of kin to approach health
facility managers in cases where they may be concerned about anything, in line
with their Constitutional rights,” concludes Maphisa.