*CARING FOR CHILDREN WITH SICKLE CELL DISORDER; A PERSPECTIVE FROM SICKLE CELL ORPHANAGE AND UNDERPRIVILEGED HOME*
Most popular opinions about sickle cell disorder sees it as a death sentence which is entirely false and not always the case. Sickle cell patients can live full lives and engage in all activities that other people do. They can get married and bear children but should not exceed their capacity in child bearing and should seek medical advice on how best to manage the situation of child bearing.
Children living with sickle cell needs exceptional care and attention to stay as healthy as possible. This care is mostly proactive inorder to prevent them from falling into crisis episodes. Serious attention should be given to their body temperature and appetite for food. When there is a low appetite, or the child becomes withdrawn, then there is a probability that the child might fall sick.
After my marriage 2020 and with the support from my family, I founded the first sickle cell home in Nigeria exclusively taking care of vulnerable and orphaned sickle cell children from 1 year to teenage years. Living with sickle cell disorder myself, I have a better grasp of the situation and very clear about the dos and dont's for an effective sickle cell management. I embraced the calling with passion and set out with visions I think would impact on the lives of such vulnerable sickle cell children.
Firstly, we have to look for an appropriate location for the home to ensure its serenity and ambience away from the usual hussle and bustle. The accomodations is well spaced and ventilated to allow free airflow and conduciveness. Sickle Cell patients don't need environments where they would feel suffocated or noise pollution to the detriments of their health.
I began with about 6 indigent sickle cell children whom I found absolutely neglected and abandoned. I discovered the circumstances surrounding some of their births to be that of pre-marital misadventures. Their mothers gave birth to them out of wedlock before getting married. They could not follow the mother to her new home because of their health challenges and no man would agree to accept them under his roof knowing about the financial consequences of doing so. In most cases, the birth mother would keep their identities a guarded secret from the new husband, and leave them at the mercy of her aged parents who has no clue or very poor to manage their precarious health challenges. This unfortunate scenario is the highest contributory factor of death rates among sickle cell children.
We began with giving them a sense of belonging in the actual sense. Reversing the deep psychological trauma orchestrated by feelings of abandonment. Providing them with basic needs and protection, while instilling them with the fear of God and neighborly love. As education plays an important role for success and self development, all children in the home, now 22 in number are enrolled in different classes of learning from primary to secondary schools.
Having been able to sustain the tempo irrespective of our numerous challenges particularly the financial angle, I have come to appreciate the significance of having a stable mind when delving into a contentious vocation like sickle cell advocacy. The journey can be torturous and overwhelming, but cultivating a positive outlook is sinequanon to getting the best results.
In my discovery, government ministries responsible for women and child affairs should dissuade conventional orphanage homes from cohabiting sickle cell children along with others. This is because sickle cell children needs special attention which these conventional homes are incapable of handling. It is my dream to see that all state governments replicate our success story in their various states by encouraging those sickle cell advocate driven by passion to set up a community home exclusively for the care and wellbeing of vulnerable sickle cell children.
Mothers and the society in general should stop giving the false impression that sickle cell children have a shorter life span and so deserves nothing as they see any investment on them as waste. I am in my forties, happily married with children, and full of live and joy about motherhood.
On the part of the caregivers, doctors, nurses, pharmacists, lab scientists etc, they should continue being soft and patient with sickle cell patients when handling health matters. Being insensitive or rude to our plights hurts us more than the crisis pains. Researchers on sickle cell should desist from subjecting our bodies as guinea pigs or exploiting us wickedly for financial or career gains. We see these caregivers as little gods because they sometimes hold the keys to our respite when burdened with the sufferings that comes with sickle cell.
Churches too should stop making light of the dangers of sickle cell by giving hope to couples whose genotype are incompatible that faith alone can save them from birthing sickle cell children. Sickle Cell is no respecter of status or ones religious affinity, but careful genotype education and counselling should be made accessible in every church to guide intending marriage couples into making the right decision.
Government, NGO's, religious centers, support groups, etc, all have a stake in ending sickle cell disease in Nigeria. Government being solely responsible to enact and implement laws on sickle cell eradication and treatment. All forms of discrimination, stigmatization, exploitations, abandonment or other ills against persons living with sickle cell disorder should stop forthwith, while defaulters should be made to face the wrath of the law when apprehended. Giving sickle cell persons equal opportunities is the way forward, help them to help themselves. Empower them to be productive and contribute their own quota to the nation building and advancement.
Our sickle cell orphanage and underprivileged home is located in Agulu, Anaocha LGA, Anambra State. We are doing our best to make a difference in the lives of vulnerable sickle cell children, and with your support and prayers, we would achieve a lot even beyond expectations.
Aisha Edwards Maduagwu,
National Coordinator,
APLSCD and
Director,
Sickle Cell Orphanage and Underprivileged Home Agulu.
08033222007.