Founder of a non-governmental organisation, Treasured Kids Foundation (TKF), Mrs Oluronke Kalejaiye, has stressed the need for neonatal screening for new born babies for the detection and prevention of congenital abnormalities.
Kalejaiye also called for an inclusive society and quality life for children with congenial and genetic disorders.
She made the call at the maiden edition of the conference organised by the Foundation in Lagos on Tuesday.
Various speakers at the conference themed, “Raising a Community of change with one” also advocated early diagnosis and prevention of congenital abnormalities in new born babies while also lamenting the economic and emotional burdens it impose on both the sufferer and the family.
Sharing her emotional laden experience as parents of a child with special needs via zoom, Kalejaiye said, “Treasured Kids Foundation was born out of our experience and exposure as parents of a medically fragile child with a rare neuromuscular disease called Myotubular Myopathy (MTM).
Hence this conference is to provide a platform for engagement on creating an awareness for the care and prevention of congenital and genetic disabilities in African children between ages 0 and 12.
Our goal from the beginning has been to create opportunities where individuals with special needs, their families and professionals within the community can come together to share knowledge, inspire one another, and drive meaningful change; while also providing personalised support and resources to our beneficiaries.
We strive to bring awareness to conditions that are very rarely talked about, with the hope that it would help break barriers and make our community safe and inclusive for everyone with disabilities.
Our mission is to eradicate ignorance, negative stereotypes, social isolation and stigmatisation against these special children.”
Guest speaker and head, Consultant paediatrician, Alimosho General Hospital, Dr Temitope Adegboyega disclosed that lot of people are at risk of congenital abnormalities while also advocating for neonatal screening for the early detection.
He said, “Congenital disorders are not that common in Lagos state. Despite this, a lot of people are at risk. These conditions depend on nature and nurture. It is something that is inherited from the parents. It may either be through the father or the mother or both parents.
Sometimes it could be as a result of an infection that leads to congenital malformation. This might affect other part of the body. If they are born with it according to nature, we will be talking about T21, William disease and so many of them like that.
In this part of the world, there is an urgent need for a neo-natal screening to detect abnormalities in new born babies. On the part of the government, they should be able to do neo-natal screening for every baby that is born especially for diseases that are common. I know in the UAE, they do about 45 neo-natal screenings for new born babies. We don’t have to wait until these babies started presenting with those features. There is no need given birth to a child that will cause agony in the future.
There are common conditions that the government is laying emphasis on. These are the six killer diseases and six common diseases. However, to prevent increased number of congenital abnormalities, mothers should be mindful of what they eat. I think it high time we look at possibility of doing neo-natal screening at every birth. I know they do pre-natal screening in health facilities in the state and I also know that it is not done for all pregnant women because it can be quite expensive. Lagos state government can find a way of doing this neo-natal screening for every mother and bring down its cost. As of now, I don’t know of any government involvement in neo-natal screening perhaps they exist and I’m not aware.”
Speaking on the aims of the foundation, country Director, TKF, Michael Kayode-Ojo, said it is aimed at impacting positively on the lives of physically challenged children.
In his opening remarks, he said, “It is a thing of joy to see this conference come to reality. It is a conference held to share ideas and learn about the physically challenged children.
Our precious children didn’t get to receive the needed care and attention because of neglect and stigmatisation attached to their existence. And if these children didn’t receive the needed care and attention, they might end up on the streets or being molested and assaulted.
This is one of the reasons we held this conference to learn about how we can care for children with special needs while also providing specialised supports for the parents. We strive to bring awareness to conditions like congenital disorder. We hope that creating the needed awareness will help to address this stigmatisation and neglect.”
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