By Abubaker Mayemba
& Marion Dehier
It is 5pm on a warm Friday 24 August 2018 and at this Indian hospital, Racheal Katusiime is tormented by bouts of emotions – between hope and despair, between courage and fear – her little daughter Maria between life and death.
Doctors here at Narayan Hospital in Bangalore said the complicated heart operation would last four hours; but Baby Maria Alinda has been in the operating theatre for seven hours and her mother starts to cry.
Panicking, the mother of two darts to the reception desks and asks what is happening. Surgery not yet finished, she is told. This only makes her more anxious. “They said four hours,” she thinks, as the phone rings.
It’s her husband, Alex Satade Alinaitwe.
A cleaner with Norema Services Uganda Limited, Alex tries to reassure Racheal that their second child will be fine. It doesn’t work. Instead, Racheal is thinking about how to break the bad news to all the people who contributed money for this life-saving operation.
Those people include dozens of IOM Uganda staff, who donated various amounts of money and time to try and save their cleaner’s baby.
How it started
Alex recalls that at the beginning of 2018, they took Baby Alinda, who also has Down syndrome, to Nsambya Hospital for a regular checkup. Then 6 months old, Alinda had started developing some difficulty in breathing and was growing tinier, paler and weaker. They were referred to Uganda Heart Institute (UHI) at Mulago hospital, where the devastating news was later broken.
“We were told that Alinda’s heart had three holes, one big and two small. They advised that she be operated abroad before she made a year to save her life,” says Racheal, who worked as an office administrator with a local company.
But where could this young couple get the estimated USD10,000 for the operation?
Already they were struggling just to keep up with the basic hospital bills. Moreover, Racheal had had to quit her job to care for her ailing daughter. Alinda’s five-year-old brother Travis, was sent to live with his grandmother.
Still, inspired by stories of heart patients for whom the public raised money, Alex and Racheal started appealing to family, friends and well-wishers for money. Despite the generous contributions the target of UGX 36 million seemed like a pipe dream.
And time was running out. Day by day, Baby Alinda appeared to be getting worse as she approached her first birthday, the deadline for the surgery. She was now sweating profusely all the time, and her breathing was more difficult.
Eventually an employee of UHI advised the family to contact Action for Disadvantaged People (ACDIPE), a non-governmental organization that supports children who are at risk, abandoned, abused and vulnerable.
The organization sent Alinda’s medical results to a hospital in India which confirmed that the little girl’s heart would be operated at USD 10,000 (about UGX 37 million) in September. Of that money, ACDIPE promised to contribute USD 4,000 (about UGX 15 million) if the parents could raise the balance of USD 6,000 (about UGX 22 million).That was a huge motivation. But still 22 million seemed an impossibility.
Yet, somehow, the impossible became possible.
Indeed now, thousands of miles away in Bangalore, Racheal is thinking about those frantic fundraising efforts that enabled mother and baby to travel. Suddenly, at about 8PM, the theatre doors squeak open. Alinda is wheeled out and Racheal springs to her feet. But what she sees scares her even more: a motionless little thing with clear tubes running from her nose and plasters allover her chest.
Before Racheal has fully digested the picture, the nurses wheel the baby into the intensive care unit (ICU), leaving a near-traumatized mother.
“I couldn’t believe my eyes. It was too much and I couldn’t hold it, I called him [Alex] crying,” Racheal recalls.
Despite Alex comforting her, Racheal is not even sure the baby is alive.
IOM Staff fundraiser
As Racheal was struggling in India, Alex was in Kampala in constant contact with the IOM Uganda Staff Association Committee (SAC). In July, after the couple asking for contributions and having no hope for more from all friends, family and well-wishers, a desperate Alex had approached IOM Uganda staff and management for help. The response was phenomenal. A message on the SAC WhatsApp group attracted outpouring of sympathy and ideas. Soon, donations started to trickle in; a car-wash fundraiser was planned for 01 September, and appeal posters were sent to IOM staff and to other UN agencies.
“We planned to hold a car wash so that all well-wishers would come. We even opened up a bank account for the baby and availed mobile money lines because Alinda needed this operation urgently,” says Warda Karama, a Senior Operations Assistant at IOM Uganda.
But then, Alinda suddenly deteriorated. Doctors warned the operation now needed to be carried out in August (not September) if the baby was to be saved. The carwash fundraiser was abandoned. Encouraged by the Chief of Mission, SAC members hunted for money the way politicians hunt for votes. They went desk to desk and sent emails and WhatsApp messages calling for emergency contributions.
One of the most touching donations was Shs 20,000 from a six-year old girl who heard Maria’s story and decided to empty her saving box.
In all, the IOM ‘family’ managed to collect about UGX 11 million (USD 3,000). Part of the money was used for a return ticket to Bangalore with Emirates, the airline putting oxygen on the flight in case Alinda’s condition deteriorated. The rest was used as upkeep by Racheal to care for her daughter during their stay in India.
“This was a special show of solidarity by the staff, including the Chief of Mission, to help the unfortunate baby,” says SAC President Peter Nzabanita. “Some staff donated more than once; others appealed to their friends and family members to also chip in.”
In addition, IOM management engaged Norema (Alex’s employers), and the company generously advanced Alex UGX 7.5 million to help get all the required funds in place. Now, every month the company deducts UGX 100,000 from Alex’s salary to help repay the debt. That leaves him on the edge, but Alex has regained his smile.
Baby Alinda and her mother spent one month and two weeks in India. The first two weeks were spent at Narayan Hospital in Bangalore where doctors monitored the baby’s condition before and after surgery.
After one week in intensive care, Baby Alinda started improving. Soon, they moved into a nearby hotel, from where, Racheal took the baby Alinda for monitoring and dressing.
Despite the unhealed scar on her chest, Baby Alinda continued to improve, and she started to breath naturally and sit on her own, until doctors cleared her to return to Uganda.
On 02 October 2018, Racheal and Baby Alinda landed at Entebbe Airport. Alex was among the family members that welcomed them. He recalls that before his daughter underwent surgery, she was too weak to sit. Five months later, she is doing fine, and has started calling Tata (father).
Racheal, who holds a diploma in customs clearing and forwarding, is now hunting for a job, confident that her daughter will do just fine.
On Monday 26 November, Alinda celebrated her first birthday, something the parents could not have imagined three months earlier.
“She had a favour because whoever we told about her condition would bring something at least,” says Alex. “If it wasn’t for the favour of God and people, we alone weren’t going to manage this. Whoever contributed to saving Alinda’s life, we just say ‘thank you and May God help you’.”