This story below showed up on my google alert. My heart and prayers go out to the parents. Judging by the article it sounds like another case of bad doctoring as the article does not mention the doctors giving the parents any choices i.e The NIV PRotocol of Dr. Bach, Tracheostomy etc. Most of the time kids die untimely deaths because of misinformed, conventional Dr.'s that can't get past their own egos of not knowing what to do. Unfortunately because these doctors do not have the will to just get on the computer and look at the www.fsma.org or www.smasupport.com site and look at the links page and contact doctors with lots of direct experience caring for SMA Children in the U.S. the kids die untimely deaths because the doctors are plainly "Egotistical Jackasses." I have to add that i HOPE the doctors did give this family choices but I highly doubt it.
Baby's death: parents want to advise others
17 August 2008, 13:43
By Noelene Barbeau
A young Durban couple's new- born son died recently from spinal muscular atrophy, a motor neuron disease.
In his memory, they want to create more awareness of this disease and help fundraise for expensive equipment that many families cannot afford to buy their children.
Spinal muscular atrophy (SMA) affects the voluntary muscles used for activities such as crawling, walking, head and neck control and swallowing.
Lavon Chetty was just 56 days old when he died. His parents, Dean and Terene Chetty, of Parlock, were thrilled to welcome him into the world on June 1.
However, a week later, after a series of tests, they learnt he had SMA type zero, a new classification of the disease and apparently the worst. At present, there is no cure for SMA.
'The day we found out, we came home and started doing some research on the Internet. We had never heard of such a disease and the internet just listed three types of SMA.
'SMA zero is when a baby has the disease from birth. At first Lavon could move his fingers, hands and legs, but slowly this stopped. From the time he was born he couldn't breathe without the ventilator. He also had to have a drip and a tube placed through his nose that went to his stomach,' said the grieving dad.
'He was a very alert child. He would smile when we spoke to him and would frown or cry if something was hurting, but his eyes told you his story. We had a short time with him, but we formed a close bond. The nurses were also very fond of him. They really went the extra mile for Lavon,' said Terene.
They were regulars at the neonatal ICU ward at St Augustine's Hospital and had a team of doctors to help. Forming part of the team was Prof John Rodda, a paediatrics neurologist from Johannesburg.
He said SMA affected children across all race groups and was the most common neuromuscular disorder in children.
'Regarding testing for SMA, it won't be detected in women who are pregnant for the first time, unless there's a family history of SMA,' he said.
'Antenatal testing can be done if the couple suspect their unborn child could have SMA.
'A child's blood can also be tested if his or her parents think he or she might have it.'
Terene was not tested for SMA while she was pregnant with Lavon because neither Dean nor Terene's family had a history of SMA.
But knowing what she does now about SMA, Terene feels every pregnant woman should be tested for it at their first eight-week check-up and from there make an informed decision if SMA is detected.
The couple said they had known a few days before Lavon's death that he was going to die.
'We had to plan a funeral for him before he died. That was the hardest part,' said Dean.
The Chettys searched the internet for a local website that could help them speak to parents who had been in a similar situation.
They found the Leah Reilly Foundation and met Cara Reilly, whose daughter Leah died a year ago when she was 19 months old. Leah was diagnosed with SMA type 1.
The Reillys also found a lack of support in South Africa, which led to Reilly establishing the foundation.
Reilly said local statistics were not available and she was aware of only eight South African cases.
At a recent fundraiser, University of Witswatersrand lecturer Diane Manning said she would include SMA studies in the medical syllabus from 2009.