Globally, the month of September is recognized as Newborn screening awareness month and marked as such.
This year, Rare Disease Ghana Initiative the non-profit organization championing the cause of individuals with rare diseases in the country, led an awareness campaign on the various congenital conditions that present at birth and adversely affect newborn growth and quality of life.
In a bid to utilize the far-reaching potential of social media, the campaign was conducted majorly on such platform via the Instagram, Twitter ‘handles’ of RDGI as well as the WhatsApp accounts of its almost 100 team members who assiduously posted facts and figures of medical conditions that can be screened for in newborns. Visibility was achieved via the hashtags #Newbornscreening #congenitalanomalies #supportnewbornscreening #savethebabies and those for the conditions highlighted, such as #congenitalhypothyroidism #maplesyrupurinedisease etc.
This was quite successful as RDGI social media accounts were able to garner engagements from likes, shares, and comments while the team members were able to educate their personal contacts as well as get them to repost further increasing the audience of said posts.
On the 24th of September, in the 4th week of the campaign, RDGI hosted a live webinar on Newborn screening with the topic: ‘Fronting the campaign for Newborn Screening: A Prerequisite for Healthy Pediatric Development’ with the internationally recognized Prof. Bradford Therrell, known in some circles as ‘the father of newborn screening’, as special guest and speaker. Other speakers were Prof. Kwaku Ohene-Frimpong (President, Sickle Cell Foundation of Ghana and National coordinator, Newborn Screening for Sickle Cell Disease) who , Dr Ma-am Joy Tumulak (Genetic Counsellor, Institute of Human Genetics, University of Philippines) and Mr Haneef Amissah (Program Lead, Diagnostic Program, RDGI).
The session was highly informative and eye-opening. As the first speaker, Prof Therrell, opened with the various conditions screened for in newborns as well as maps of conditions screened per country, the challenges to implementing sustainable newborn screening (NBS) in healthcare system of developing countries i.e. education/awareness, screening challenges/specimen storage, follow-ups etc. His recommendation included suggestions for actions and collaboration and for countries to develop NBS within the limits of their public healthcare system, but along the line of the Rabat Declaration which states newborns must be screened nationally for at least ONE condition.
In his address, Prof Ohene-Frimpong gave a historical overview of how newborn screening came to be in Ghana, its successes and current challenges with co-opting other conditions asides sickle cell disease into a national campaign. He also shared with participants on the process of data and specimen collection, testing, interpretation and tracking done at the Kumasi Centre for Sickle Cell Disease (KC-SCD) as well as what health maintenance/management of individuals with Sickle Cell disease at the centre entails. This includes pharmacological management as well as family education and enforcement of messages.
Dr Tumulak spoke about genetic counselors and the role they play in advocates for newborn screening, even before the baby arrives i.e. prenatal counseling and detecting the possibility of a particular condition in the families of both parents.
As an RDGI team member and Lead of the Diagnostic Program, Mr Haneef Amissah gave the final address of the webinar and basically reiterated the facts stated by the earlier speakers while giving a roll-out of the plans RDGI has, regarding collaboration with the foremost teaching hospitals in the country for training and equipping them with resources to increase the number of babies to be screened for congenital conditions.
In a closing remark, the Founder/Executive Director, Samuel Agyei Wiafe emphasized that awareness for newborn screening will not end in September, and the hope of the Rare Disease Ghana Initiative (RDGI) is that more people (health workers and general public alike) will know that there are diseases that can be detected at birth and interventions can occur at the earliest time possible to ensure that babies affected can live a quality life. This is important in order for Ghana to fulfill Goal 3 of the Sustainable Development Goals: Ensure healthy lives and promote wellbeing for ALL at ALL ages.
The newborn screening campaign was sponsored by Equilinks Consult which provides psychological consultancy services.
Watch the recording of the webinar: https://vimeo.com/461705272