Albinism is one of the most misunderstood conditions. In a lot of African countries, people with albinism face high levels of discrimination and stigma. They also face a lot of violence, while most are projected to live until 40 years of age. Each year on June 13th, the world commemorates International Albinism Awareness Day, hence I decided to share ways to care for a baby born with albinism.
A reminder that we are now in the third week of the Afrobloggers WinterABC Festival. This week is dedicated to Stories of Awareness. I am glad that we are starting off the week shedding a light on the daily struggles that people with albinism face.
Firstly, let me make it known that a lot of people (some learned) do not understand why or how babies are born with the condition. So, before we start sharing how to care for them, we need to understand what and how it is gotten.
What is Albinism?
Mayo Clinic defines it as
a group of inherited disorders where there is little or no production of the pigment melanin. The type and amount of melanin your body produces determines the color of your skin, hair and eyes.
Due to the reduced amount of melanin, people with albinism develop eye problems. Melanin helps in the development of the retina. This causes poor eye-sight, blurred vision, photophobia, and involuntary eye movements.
Lack of melanin also causes their hair to either be white or light blonde, although others may be ginger. It also leads to skin diseases, which may result in skin cancer.
It is important that parents understand this, and how they can best care for their babies. However, it is also important to understand what causes the condition.
Causes of albinism
From my little knowledge of biology, plus Google and my doctor-brother, here is how a baby can be born with it.
- One way of getting it is if both parents are carriers of the gene. This means that both parents have it as a dominant gene which is then passed on to the baby.
- Another way is different for boys and girls. If one parent has it as a dominant, they are likely to have their son be born with it. While their daughters might just be dominant carriers of the gene, without them being born with albinism.
However, the biggest cause of the condition is in-breeding. A lot of Africans marry people they share an ancestor with, which increases the chance of having kids born with albinism.
I also noted that another cause can be due to gene mutation (change of genes).
How to care for a baby born with the condition
Firstly, it is crucial that parents understand that caring for a child with albinism is not easy. There is so much that needs you to do, especially mentally. More so, if you live in a continent like Africa.
The most important thing is for you to show so much love to your child regardless. This love will keep both you and the baby going. Here are some ways you could care for your baby:
- Make sure to visit an eye doctor the minute you realize your baby has albinism. This allows an early diagnosis of any optical problems that the baby can face as they grow.
- Also important to visit is a dermatologist. That way, you know how to care for your baby’s skin
- As they grow, it is important to always dress them in sun-protective clothing so that their skin is not damaged by the rays
- A good investment will be in sunscreen and sunglasses
- Always take your baby to their appointments
Unfortunately, those are things that can be easily dealt with. Their emotional and mental well-being will be a test as they grow. In Africa, some children with albinism drop out of school due to bullying. In Malawi, some are referred to as ‘Azungu’ which means white people but in a condescending manner.
They can be prone to teasing and discrimination. As a parent, it is important to make them love themselves entirely. You need to make them realize that they are different and unique in their own manner. Kids with albinism need more assurance in order for them to have high self-esteem.
And to other parents, it is important to teach our kids how to love their neighbors. It is important to make them aware of such conditions and how normal they can be. Another important lesson to teach is acceptance and inclusivity of others who are different from them.
Raising a baby with albinism in Africa
Raising a baby with albinism in Africa is extreme. Not only do you have to worry about the stigma and discrimination, but also the violence they could face.
In countries like Burundi and Malawi, people living with albinism have experienced extreme levels of violence. In Malawi, the abductions rose in 2018. Bodies of people with albinism would be found with some of their body parts removed. In total, there were 40 murders and more than 100 assaults on people with albinism.
It was known that their bones were worth a fortune on the black market. While others speculated about the rituals that require such bones. These rituals would bring one power and riches they said.
During this time, every person with albinism would go into hiding before sunset. Their homes were targeted, which made others flee. Parents feared for their children, often hiding them. No one would be trusted to be around them.
This year, a priest, hospital employee, police officer, brother, and a few more were found guilty of a gruesome murder committed in 2019.
Raising a baby with albinism in Africa would require more caution.
Spread the message! Share your comments below.