Wednesday, October 24, 2007
Saudis and Sickle Cell: Breaking Under "Takesser"
“Y’uma (mommy)”, the little boy in the bed across from us kept moaning, “my hand hurts”.
His young mother would stroke his head and whisper to him, trying to comfort him in the dark as she lay with him in the same hospital bed as the 3 year old cradled his aching hand and ceaselessly moaned the same complaint the entire night. To the right of the whimpering boy was a frail-looking little girl hooked up to an IV bag of a vile-looking reddish-brown liquid who remained silent and motionless our entire two week stay except for occasional, labored walks to the bathroom which sapped the little strength she had. In the bed to the left of the moaning boy and his mother, was a pair of sisters. The oldest girl, a very sober 13 year-old, was looking after her younger sister during her stay in the hospital. Their mother had to stay home to care for her other children. In the morning, after that first sleepless night in the hospital with a sick 6 month-old EttaMae, I asked that young mother about her son.
“What’s wrong with his hand?” I hadn’t noticed any cast or bandages to indicate that the little boy had been injured in any way.
“Nothing’s wrong with his hand, thank God”, she replied to my surprise.
“Oh, I was just wondering since I heard him complaining (the entire night) that his hand hurt him.”
“It’s not in his hand, it’s Takesser (Sickle-Cell)”, the young mother admitted in a hushed tone.
The frail looking little girl to the right was in for complications from Takesser too. A Nigerian doctor would ask her several simple medical questions in his remedial, broken Arabic phrases only to converse with his coworker using contrastingly complicated English words like “transfusion” and “organ failure”. The younger of the two sisters to the left was hospitalized for Takesser as well. Out of the 6 children in that particular family, only the oldest one, the 13 year old, did not have the disease and both the mother and the father had it as well. In fact, out of the 6 patients in that room, 3 were there for sickle-cell. And they weren’t alone.
In the United States people are often surprised when they learn that a person who is not African American has sickle cell disease. The disease originated in at least 4 places in Africa and in the Indian/Saudi Arabian subcontinent. It exists in all countries of Africa and in areas where Africans have migrated. The transatlantic slave trade was largely responsible for introducing the sickle cell gene into the Americas and the Caribbean. However, sickle cell disease had already spread from Africa to Southern Europe by the time of the slave trade, so it is present in Portuguese, Spaniards, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. Sickle cell disease appears in most of the Near and Middle East countries including Lebanon, Israel, Saudi Arabia, Kuwait and Yemen. Sickle-cell in the western part of Saudia is similar to the type that shows up in Africa however, the type of sickle-cell in Eastern Province in Saudi Arabia is called the “Indian” sickle-cell mutation and is thought to have been introduced from/to the sub-continent via ancient maritime trade routes hundreds of years ago.
Ironically, another study claims the reason sickle-cell has spread across so many diverse populations has everything to do with MALARIA. They propose that because people with sickle-cell are protected from malaria, they lived longer than their sickle-cell-free brethren in areas with high incidences of malaria enabling them to reproduce more thus, passing on their malaria-free though, sickle-cell tainted blood to their children. Judging by pictures like this of old Al-Hassa and how my house is filled with mosquitoes every winter during the “wet” season, I can go along with this theory as I imagine malaria used to be a big problem here.
Al-Hassa has been hit particularly hard by Takesser and I’ve heard that we have more cases of Takesser here that in the entire rest of the kingdom combined. One study indicated that approximately 20-30% of Saudi newborns in the EP are carriers of the sickle cell trait. Can you imagine 30% of your population carrying a trait which could afflict their children with pain and misery most of the days of their shortened lives!
Although I’d been around Arabs a significant part of my life, I’d never been aware of how prevalent the disease was. No one wanted to talk about it or admit to having it in their family until recently. A government awareness campaign was launched a few years ago as well as mandatory pre-marital blood testing which put the topic of the disease on the table. Although I’d asked about the takesser-status of several individuals in the family before, up until 3 years ago no one knew nor would admit to who had sickle-cell or who was a carrier in the family. This all changed when a young man, known to have sickle cell because of the painful attacks he’d had in front of my husband’s brother, came to propose to one of the young women in the family.
“Has she been tested to see if she’s a carrier or not?” I asked my husband.
“I don’t know”, he replied with a type of indifference.
This was before the wide-spread governmental education program about the disease and the blood tests were not yet mandatory. Even if someone knew they were a carrier, many parents might not want to admit to their daughter being a carrier of the trait let alone having the disease because this may reduce her marriage prospects.
I continued to talk in his ear for several days, “you have to talk her into getting tested. You have to be the one as the most educated one in the family. This is very important. You wouldn’t wish for her to watch her children writhing in pain, constantly hospitalized during pain attacks. Since you know, you have to insist so at least they can make informed decisions regarding whether or not they’d want to go through with the marriage if it would may in all their children being born with this horrible affliction.”
My husband succeeded in convincing the perspective bride to go and get herself tested. However, after the results came back and the wedding plans began to roll forward, she was a bit odd whenever I’d bring up the topic of the blood tests.
“So, you aren’t a carrier then”, I asked the bride a few days after she’d had the blood tests done then immediately accepted the young man’s proposal.
“Al-Humdulilah (thank God)”, she replied and quickly shuffled away to engage in another wedding planning activity.
Hmmmm…that was ambiguous! I didn’t want to be pushy; as long as she knew what the consequences of her decision would be and she was well informed it wasn’t my place to impose my opinions on delicate matters of the heart. And it was apparent, she already had her heart set on marrying this frail, pain-racked young man and nothing was going to deter her.
After the wedding contract was signed and sealed, the ladies of the family all lounged around at the “engagement” party (khortuba) amongst the palm trees at one of Al-Hassa’s many farms and chatted about the bride’s decision to marry the sickly young man.
“You do realize the blood tests confirmed she is a carrier, don’t you? She was just afraid to tell you and your husband for fear you may do something to try and stop the wedding”, one of her cousin’s intimated to me.
I smiled, “I figured as much, but we wouldn’t have done anything like that. We just wanted her to know so she was fully aware what she was getting herself into. It broke my heart watching those kids in the hospital and I’d never wish that on anyone.”
“I know, I’ve seen so-and-so with their kids as well as so-and-so…” and this cousin began naming off individuals in my husbands family who are all afflicted with sickle-cell as well as their kids. I was gob smacked! I didn’t have any idea. I made this cousin spill the beans and tell me EVERYONE who has the disease in his family.
As it turns out, none of my husbands siblings have the disease although a few of them do carry the trait. However, there are many, MANY members of his extended family who have the disease and who are in and out of the hospital with their ailing children. I was around these relatives all the time, but any problems they had from takesser were explained off by other causes such as “achiness” caused by changes in the weather or “bad periods” for young women.
Time rolled on and the young bride became a mother. I held my breathe during her pregnancy until we received the happy news that her beautiful boy with shining eyes and gorgeous dimples was takesser-free and would never suffer the pain his father endures.
All I can say is, Al-Humdulillah (thank God).