Last month, the founder of Child-Help, Pierre Mertens, visited our friends and colleagues in Malawi, as a part of the project visit. In the following 5 posts we will present Spina Bifida and Hydrocephalus in Malawi, through the work of our partner – CHSBH Malawi.
We will write about how far the work has come, as well as challenges and hardships they had to overcome, and the storms that are yet to be weathered.
To start at the beginning, 3 years ago, one of our good friends and a fellow man in this joint mission of saving and improving lives of children with spina bifida and hydrocephalus (SBH), Blessings, started Child-Help Malawi. Previously, Blessings worked for the Spina Bifida and Hydrocephalus Association in Malawi, where he got trained for the work with SBH children and he is also a palliative nurse.
The parent organization CHSBH Malawi is located in Blantyre. Children who are being helped for the surgeries go mainly to the neuro clinic in the large Queen Elizabeth Central Government Hospital. There are just 4 of these in the whole country of Malawi, spreading across 118,480 km2, with a population of 20 million. For the statistics on Spina Bifida and Hydrocephalus, it’s reported that out of every 10,000 individuals, 4 have spina bifida or hydrocephalus.
Therefore, about 8,000 children and adults in Malawi have SBH. Of course, that is just a projection number, the reality is often far harsher than we can anticipate based on data that was collected at a certain period in time.
To get back to the hospital setting, and paint a picture of the hospital, let’s start with the fact that there are twice as many patients in the hospital as there are beds, and remember, it’s the largest hospital in Malawi. The conditions under which staff and children survive in wards are unimaginable and, by any European standard, unacceptable. Children and adults are mixed in the hospital wards. Neonatology is also overcrowded, especially because the mothers have to come with their child, and there is no accommodation for them, so they sleep on the floor at night.
As we weren’t able to take many photos within the wards while patients are present, the following one is a good picture of the chaos in which mothers are while at hospital.
As we continued to follow Blessings through the hospital, we encountered the project administrator who showed us how the children are registered, and their medical cards. They have a good system in place, the patients who are at the top of the list are to see the surgeons first, and then, when the visit is done, based on the outcome, they are moved down the list, awaiting other interventions. Children have priority over adults, and every child with Spina Bifida and/or Hydrocephalus has (or gets) a Child-Help SHIP passport.
What is a SHIP passport? It’s a document containing medical information about children with SBH necessary for the aftercare of these children. SHIP stands for Spina Bifida Hydrocephalus Interdisciplinary Program, and the whole idea was developed about 15 years ago in Belgium, with experts in the field.
While we were going through the wards, Blessings spotted a woman with a boy on her back, fixed with some sort of fabric. Let’s end the first part here, and continue to what happened after we did an initial visit to the hospital in our next piece, covering the story of Aisha and her boy Razack.
At the end of our 5-day article streak, we will make a pdf of the uncut, original Pierre’s report, which has more to the story, and it will be sent via email to everyone who wishes to become a part of our mailing list, and continue receiving reports as we get them within Child-Help, and also get regularly informed about our projects, and fundraising opportunities.
Contributions are always needed. You can start making yours here.
Until tomorrow,
Child-Help
