“She is a fighter.”
That’s how ‘Mathato Lebakae describes her daughter, Keneiloe, who is now two years old. Keneiloe was diagnosed with Down’s Syndrome and a heart disease called Atrioventricular Septal Defect (AVSD).
Keneiloe underwent an official open-heart surgery, open chest and tube placement at the age of nine months, in August last year. Before the surgery, her heart had to work harder than normal to pump enough blood out of the body.
Down’s Syndrome is a genetic condition that occurs when an error in cell division results in an extra chromosome 21. It can affect a person’s cognitive ability and physical growth, and there may be a higher risk of some health problems and causes varying developmental differences.
An AVSD, common to Down’s Syndrome patients occurs when there are holes between the chambers of the right and left sides of the heart. In people with AVSD, the valves that control blood flow between these chambers may not form correctly.
In AVSD, blood flows where it normally should not go. The blood may also have a lower-than-normal amount of oxygen, and extra blood can flow to the lungs. This extra blood being pumped into the lungs forces the heart and lungs to work harder than usual. This may lead to heart failure.
While Keneiloe has gone through so much in her life, she has responded well to the heart surgery and treatment, and her life has significantly improved.
Like other two-year olds, Keneiloe has started showing a smile. Her eyesight has improved and she is now playing, while her breathing and her oxygen saturation has improved from less than 60 to100 percent. Oxygen saturation basically refers to the concentration of oxygen in the blood. Keneiloe was born at Queen ‘Mamohato Memorial Hospital with no birth defect.
“When Keneiloe and her twin sister were born, she had no confirmed birth defects. But her growth was worrisome. Unlike her twin sister who had started showing signs of mobility and doing small activities herself, Keneiloe was too slow, not feeding well, not playing, gaining weight slowly and had rapid breathing.
“I tried to express my concerns to the nurses but they maintained even twins would not show same improvement at the same time. The signs would persist, until at nine months when the doctor said she had symptoms of Down’s Syndrome and recommended a heart test in Bloemfontein South Africa.
“It took some time before she could be operated on. At times she would fall ill at the time the operation was planned, and that would force doctors to postpone. Eventually, the process went on successfully,” Lebakae recalled.
After a going through a successful surgery, Keneiloe spent a week in the Intensive Care Unit (ICU). For the first two weeks after, the surgical area was swollen, her condition was heart breaking as she was sedated and unable to move.
Lebakae says they had to stay in Bloemfontein for a month while waiting for the whole operation to be completed and for Keneiloe’s recovery process, making it very expensive for the family.
She says Keneiloe has been responding well to the heart surgery, to the extent that she started saturating well. With her improvement, her appointments with a paediatrician cardiologist have reduced from monthly to six-month intervals.
After they got back in the country from Bloemfontein, Lebakae says Keneiloe was referred back to occupational therapy to help her get through her journey as a child. In every check-up, Keneiloe goes through a heart scan to determine her heart condition
“She is recovering quite well. It might be a slow development but I have learned to cope with her situation and give her the special attention that she needs.
“She is doing amazing. During her follow ups, they help her with light practices, like playing, using her hands, trying to sit still, eating. She is way too flexible and doctors say it is because her joints are too weak. She is too lazy to do some daily routines such as sitting like children of her age.
“One major challenge is that she gets sick too often. She loves attention, care, and being pampered. She’s too senstivie and when she is happy it becomes excessive and even when she is angry,” she noted.
Keneiloe’s fragile heart required a delicate touch, but in the country, a scarcity of paediatric cardiologists meant that the young patient had to journey across the border to the city of Bloemfontein South Africa in a last-ditch effort to save her life.
“Having a child with Down’s Syndrome is a lifelong rollercoaster ride, but Keneiloe has opened our eyes to a whole new world, one we would like to share with everyone,” she noted.
As Keneiloe’s family clung to the hope of her survival, a larger crisis looms. The absence of specialists in Lesotho, particularly in the field of paediatric cardiology, has become a point of concern, not only for parents like Lebakae, but for the medical community at large.
For the medical fraternity the lack of resources and expertise was a sobering reminder of challenges faced by the nation’s healthcare system.
In a land where the mountains touch the sky, Lesotho Medical, Dental and Pharmacy Council (LMDPC) sounded the alarm on the urgent need for change in the country’s healthcare system.
“The absence of paediatric cardiologists in the country is a tragic reality. It is a sobering reflection of the dire state of our healthcare system and a panful reminder of the urgent need for change,” laments Dr Kopang Mohalenyane, president of the LMDPC.
According Dr Mohalenyane, the inability to treat patients locally means that many families are forced to cross the border for care, incurring exorbitant costs that put a significant strain on their finances.
“When we refer patients to Bloemfontein, they are classified as private patients and are often subjected to exorbitant medical bills. This places an undue burden on families who are already struggling to cope with the emotional and logistical challenges of their child’s illness.
“At the heart of this issue is a lack of political will from the government. The ministry of health has consistently failed to invest in the training and development of our own Basotho doctors. They are content to rely on foreign expertise, even as our people suffer and our health system teeters on the brink of collapse.
“This wilful neglect is an affront to the dignity and well-being of our citizens, a betrayal of the very principles upon which our nation was founded. We must demand better, for the sake of our children and for the future of our country,” Dr Mohalenyane pointed out.
He added: “Unless our government takes decisive action to train and retain our own Basotho doctors, we will continue naturalising foreign physicians or be forced to rely on South Africa for our healthcare needs. This is a shameful state of affairs, a glaring indictment on our leaders’ inability to prioritise the health and wellbeing of our citizens.
“It is a tragedy that so many of our people must suffer needlessly because of political indifference. We must hold our leaders accountable and demand that they invest in the development of our healthcare system, for the sake of our nation.
Drawing inspiration from the example of Malawi, Dr Mohalenyane implored the government to follow in their footsteps and negotiate with South Africa or other countries to train Basotho doctors who could then be reintegrated into the local healthcare system.
He emphasised the need for the government to prioritise the training and development of local doctors in order to provide sustainable and high-quality healthcare to the people of Lesotho.
In December 2011, the General Assembly declared 21 March as World Down Syndrome Day, the General Assembly decided, with effect from 2012, to observe World Down’s Syndrome.
In order to raise public awareness of Down’s syndrome, the General Assembly invites all Member States, relevant organisations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Down Syndrome Day in an appropriate manner.
According to the UN general assembly, an estimated incidence of Down’s Syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. Each year, approximately 3,000 to 5,000 children are born with this chromosome disorder.