Trials of raising a deformed child

In her seventh month of pregnancy, doctors told 31-year-old Lillian Mbabazi that her unborn baby had a problem on one foot and the back. And that was not all. One month later, the expectant mother received the most traumatising news: her unborn baby had no private parts. It was suffering from a condition called Cloacal exstrophy. For the uninitiated, Cloacal exstrophy is a severe birth defect where much of the abdominal organs (the bladder and intestines) are exposed. It often causes the splitting of both male and female genitalia (specifically, the penis and clitoris respectively), and the anus is occasionally sealed. It is an extremely rare birth defect. “After discovering that my child was going to be born with these unspeakable complications, doctors from three different hospitals advised me to abort but I refused. I just couldn’t do that. “Deep inside me I knew that if God wanted my baby to die, that would be His will. And if he wanted it to live, He would let it live – for a reason. It was against this background that I decided to ignore the advice of the doctors and give my unborn baby a chance be born – and live,” says Mbabazi, who is currently struggling to bring up her deformed baby, now one-year-old Isaac Iranzi Ndahiro. A resident of Kabeza, a Kigali City suburb, Mbabazi is married to Fred Ndahiro and has two other children – Trevor, 9, and Christian, 6. She goes on: “When doctors failed to convince me to abort, they advised me to have my baby at eight months, saying premature birth was safer for both of us. I obliged. And when they brought the baby for me to see after I had given birth, I was so sad but I accepted the situation.” Mbabazi gave birth from La Croix du Sud Hospital, populary known as Nyirinkwaya, but the baby was immediately transferred to King Faisal Hospital, where it spent three days before it was returned to her at Nyirinkwaya. Because of her baby’s deformities, coupled with premature birth, Mbabazi and her baby spent close to a month in hospital. False hope After examining the baby at King Faisal Hospital, doctors there promised Mbabazi that her baby would be operated on and it’s deformities would be corrected when US-based doctors came to Rwanda late last year. “When they (US doctors) finally came to King Faisal Hospital in September last year, I and my husband were summoned to take our baby for an operation. It was a very exciting moment for us. We thought it was time for our baby to get rid of the deformities,” Mbabazi says. Alas! After examining the baby, the US doctors realised that Mbabazi’s baby’s deformities were way beyond their expertise – they couldn’t risk carrying out the operation. In fact, Mbabazi says, one of the doctors advised the couple to just go back home and wait for the baby’s inescapable death – that it would soon succumb to its deformities. Dejected, Mbabazi and her husband returned home with their baby, like she puts it, “just like that”. Growing up Iranzi is now a jolly one-year-old lad weighing 5kgs. According to his mother, despite his horrid deformities, he loves to smile and play with his brothers, and he also enjoys looking at the TV screen. And just to avoid traumatising her older children, Mbabazi has decided to make Iranzi’s condition one of her best kept secrets. “I have never told his big brothers about his condition because I don’t want to shock or traumatise them. When I am changing his diapers or cleaning him up, I close the bedroom door. Unfortunately, his siblings are always questioning me endlessly about why I don’t change his diapers or bathe him in their presence. I always cook up stories because I think they are too young to handle the truth,” she says. “At first my husband was worried that I would never learn how to change his diapers and clean him up like it was done at the hospital. So, we asked the hospital staff to teach me how to look after him, which they gladly did. “I have since quit my job as a shop attendant because he needs someone fully dedicated to him. I breastfeed him and also give him some special milk and food supplements that I get from King Faisal Hospital. Unlike other children, he doesn’t like feeding and has no appetite. “He also uses lots of diapers, which is too expensive for us.” To raise such a child, Mbabazi deduces, it takes a soldier’s heart, dedication, God’s grace and generous doses of patience. **** Doctors’ take When Dr Emile Rwamasirabo, a urologist and acting CEO of King Faisal Hospital was consulted about this child’s case, he said the defect was discussed with Harvard specialists who concluded that it was not safe to operate on a child of that age even though such abnormalities could be corrected. The right age for an operation, he said, was between two-three years. However, Dr Rwamasirabo said that the costs involved – even though he couldn’t give us a rough estimate – were way too high. But the good news, according to Dr Jean de Dieu Ngirabega of the Ministry of Health, is that the government department gives support to such patients, as long as they are recommended by the hospital.