13-year-old Benjamin Kleyn of Cape Town, who was born with a condition that caused his chest to be concave, grew up a shy, withdrawn youngster who preferred not to participate in social activities and sports, according to his mother Petra Kleyn.
Now, after a minimally invasive procedure to correct the malformation in the sternum, a condition known as pectus excavatum (PE), undertaken at Netcare N1 City Hospital late last year, “Benjamin has dramatically changed from a boy into a young man”, his mother says.
The Nuss repair procedure, which involves temporarily placing curved metal bars behind the sternum to elevate it to a normal position, was one of the first of its kind to be completed within private medicine in the Western Cape, according to Professor Anthony Linegar, a surgeon who heads up the new PE treatment centre at Netcare N1 City Hospital and who performed Benjamin’s procedure.
“Previously, this disfiguring condition dramatically affected Benjamin’s confidence and he grew up a reserved and somewhat lethargic boy,” adds Kleyn. “Since the procedure in November last year, however, he has absolutely thrived, has been making new friends and was able to attend his first days at high school with great confidence. He even has the go-ahead to go zip-lining in Hermanus early in February! it is wonderful for me to see him coming into his own in this way.”
Prof Linegar says that pectus excavatum is one of a spectrum of congenital developmental problems affecting the cartilages of the chest wall. He notes that it is a relatively uncommon condition that sometimes runs in families, affecting approximately one person in 300 to 400 births. Some 90% of those with PE are male.
“Not only does PE cause the chest to have a distinctive and unusual inverted appearance, but it tends to displace the heart to the left of the chest cavity, thereby compressing its right ventricle. It also results in restricted movement of the chest wall.
“PE patients often lack the necessary stamina to participate in sports and other activities enjoyed by their peers. Adults with untreated PE have, furthermore, been known to suffer heart rhythm problems,” points out Prof Linegar, who practises in both the private and the public academic sector.
“In addition to the physical problems associated with this condition, it can also affect a young person’s psychosocial development, as it often has a profound impact on their self-esteem,” explains Prof Linegar.
Kleyn believes that many South African parents with children who suffer from severe PE are not aware that this procedure, which has not previously been widely performed in this country, is available to effectively repair the condition.
“Many of these youngsters have simply been left to deal as best they can with their condition, which can have an extremely negative impact on their quality of life. After Benjamin’s life-changing experience brought about by this procedure, I would like parents to know that many of the young people affected by PE can in fact be helped,” she says.
Prof Linegar concurs, pointing out that for various reasons — including the fact that few medical practitioners have been trained in the minimally invasive procedure, and the operation is not yet widely available in South Africa — a generation of PE sufferers in South Africa has not been treated for the condition.
“This problem can and must be addressed by both the private and public health sectors, as those impacted by PE can benefit greatly from the treatment.
“What we need is to create greater awareness of this condition as well as of the fact that this treatment is now available through dedicated multidisciplinary centres such as the one we have established here at Netcare N1 City Hospital,” says Prof Linegar.
“A number of South African medical schemes currently consider the procedure to be cosmetic and will consequently not cover it. This is despite the fact that PE can severely negatively impact the patient’s quality of life. Fortunately, in Benjamin Kleyn’s case we were able to motivate this and his procedure was covered by his medical scheme.”
Prof Linegar says that PE may be noticeable at birth but usually only becomes evident into the teen years. “It is best to perform the procedure when the affected individuals are still in their teens, when their bones are more malleable, and they can benefit from an early age.”
Prior to the introduction of the Nuss repair procedure, the only way to have PE corrected was to undergo a Ravitch operation, which is a substantial surgery, and many patients have opted to leave their PE untreated rather than undergo this operation.
Prof Linegar says the Nuss procedure, which was developed by an innovative South African paediatric surgeon, Professor David Nuss, and first performed in 1989, is a welcome alternative and should certainly be performed in appropriate cases at an expert dedicated multidisciplinary centre.
The procedure takes on average approximately 90 minutes. The bars that are put in to hold the sternum in position are inserted through two small incisions and left in place for a period of two to three years, after which they are removed.
Pic: An X-ray showing the special bars that were inserted during the procedure to correct Benjamin's malformed sternum.
“The Nuss procedure has a six week recovery period and can involve some post-operative pain but it has numerous benefits for young patients including a complete resolution of symptoms such as breathing problems.
“The intervention is completed without the need for major surgical incisions, avoids surgical scarring and disfigurement of the chest, and is much less invasive than the older modified Ravitch open surgery,” says Prof Linegar, who has trained extensively in the Nuss procedure and has driven the development of the PE treatment centre at the hospital.
Kleyn says that she is delighted with the outcome of her son’s life-changing procedure and was most impressed with the outstanding care he received at Netcare N1 City Hospital.
“From the bottom of my heart, I would like to thank Prof Linegar for his professionalism and expertise in undertaking the procedure, my medical scheme for funding it, as well as all of the wonderful staff who cared for us so well at Netcare N1 City Hospital, which I came to call home for the six days my son spent there,” she concludes.
Issued by: Martina Nicholson Associates (MNA) on behalf of Netcare N1 City Hospital
Contact: Martina Nicholson, Graeme Swinney, Meggan Saville, and Pieter Rossouw
Telephone: (011) 469 3016
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