By Alison Bate
I’m thinking about a little girl in Sudan today.
This little girl, whom I’ll call Afra, was born five years ago with a hole-in-the-heart and Down Syndrome.
I first met her when she was 18 months old. I had just moved to Khartoum to teach English, and was living with a wonderful Muslim family in Mygoma, near North Khartoum.
One morning, my landlady’s younger sister slid quietly into my living room, head bowed. Rehab (not her real name) was a woman in her late 30s. A long thin face framed by a green and blue shawl: peacock head and peacock body. But self-effacing, very much the younger sister.
She settled tentatively into one of the armchairs, and we sat in silence for a while, hampered by the language barrier. Suddenly, she said in fractured English: “Ali, can you help my baby?”
She left the room but returned shortly afterward holding a cute baby, tufted black hair falling on one side of her face. Baby Afra smiled and gurgled, wiggling her little legs slightly.
“She cannot sit up by herself. She does not grow. She is 18 months, but like two or three months. Also, her head is not. . . ” Rehab struggled to find the word “… normal. I can’t go any place with her. People look surprised and it makes me sad. People are not kind.”
“What is wrong with her?”
“She is Down’s baby. Also. . .”
She disappeared again and returned with a short medical report written in English the previous year, when baby Afra was six months old. It said that the baby had a complete atrioventriculoarterial canal defect, the medical term for a hole-in-the-heart. Apparently the two birth defects often go hand-in-hand.
Visiting the heart hospital
I did some research, and sent some emails to different charities. About four months later, Rehab, baby Afra and I stood outside the Salam Centre for Cardiac Surgery. It was a clean new hospital in the scratchy dirt village of Soba, 20 kilometres from Khartoum. Run by Italians working for a charity called Emergency, it was one of an army of non-governmental organizations in Sudan.
Early that morning, I’d waited and waited for Rehab, baffled when she didn’t show.
“She kept asking me to help, but where is she?” I asked my landlady, her sister.
“She is afraid,” my landlady replied. “But she must go. She must help her baby.”
Finally they came, and now we were at the gatehouse to the hospital. Security was tight and Afra wasn’t on the appointment list for the day. The guardian of the gatehouse shook his head. Annoyed, I looked at the list and saw, right at the bottom, the cryptic words: “Baby with international person, Alison.”
I pointed to this entry and we were escorted along an outdoor corridor to the main reception centre. As we waited and waited, Rehab shrank into herself, shivering. “I can smell the death,” she said, looking around at all the other Sudanese waiting for treatment.
She cuddled baby Afra tightly, then passed her over to me. Afra gurgled and hiccupped, playing with my pendant and visitor pass. A warm body, small body, smiling up at me, her little arm muscles flexing away. She was very close to being able to sit up by herself, but not quite able to do it. I couldn’t bear the thought she might die. God knows how her mother could.
After a long wait and some tests, the Italian pediatrician told Rehab that Afra was very sick, with several holes in her heart and water around her lungs, which made her weaker. It was almost too late to operate but the doctor was considering a small bypass operation. However, she wanted to consult with colleagues first. In the meantime, she gave Rehab some medicine to slow down Afra’s heart problems and said the baby needed to gain weight.
As the days went by, with no word from the hospital, Rehab lost hope, convinced that only good would come if her baby received an operation in a western country. I was returning home, and Rehab kept asking:
“Ali, can you take us with you to Canada?”
It’s not that simple, of course, to get a heart operation done overseas if you live in Sudan. Even just to apply for a Canadian visa, Sudanese people have to go through Cairo in Egypt. And some people are wanted more than others: Darfur is hot; Khartoum is not. Christians are hot; Muslims are not. Lost Boys are hot; lost girls are not. Starving orphans are hot; babies with loving mothers are not. And Down’s babies with major medical problems are on few people’s wanted list.
Just before I left, I sat with baby Afra in the family’s new home. She lay on a daybed gurgling as I played Bruce Springsteen’s “The Rising” on my laptop.
“We see you like a sister,” the family said as I flew out of Sudan. “Do not forget us.”
Outside Toronto Hospital for Sick Kids
A few days later, I stood outside the Toronto Hospital for Sick Children, holding photos of baby Afra. She smiled out at the camera, mouth slightly open, pink little tongue resting on her bottom lip.
The hospital foundation had a special program to help children from overseas, called the Herbie Fund. Inside, I talked with a helpful lady from the International Patient Program, who clucked at the photos and started a file on Afra. She handed over a detailed application form and said it must be completed within a month. I scanned it quickly: children with developmental delay, like Afra, were not eligible.
“Apply anyway,” she said.
On the plane back to Vancouver, I looked at the Herbie forms in more detail. They were daunting. Just filling in the forms would be a nightmare for someone who didn’t speak fluent English. Even if I sponsored the hospital visit by Rehab and baby Afra, it required support from a local doctor and original medical tapes. And the visa process would take a long time, too. Nevertheless, I filled in my sponsor part and sent the package off to Khartoum.
I never did get the package back. Rehab said she couldn’t get the medical information needed, and over the yearsI slowly and painfully grew to accept that nothing more could be done.
Afra is now very sick
Then this December, I got an email from Rehab asking me to help Afra. She said that little Afra had started learning some words, taking her first steps, and loved watching TV. She has improved a lot, but then suddenly got worse.
The family had taken her to the Sudan Heart Center in Khartoum, and sent me the report from the consultant pediatric cardiologist. He said that Afra has Eisenmenger Syndrome, a heart condition associated with high blood pressure in the lungs, and is not suitable for surgical intervention.
But if you are the mother of a child, you will never give up hope, and will always want a second opinion, and someone to help your sick child.
On Monday, I phoned the family in Khartoum, and Rehab’s niece helped translate. Afra has stopped walking, is not active any more and can only lie there.
“I can’t do anything for her and I feel very tearful,” said Rehab. “I really believe she deserves her opportunity to live and I really trust you to help me in saving her.”
This week, the rest of the world is focused on the vote for independence in South Sudan. But my thoughts are farther north in the country: focused on just one family, and especially on one little girl in Sudan.