The Tufla Syndrome

It seems a long time ago now as I often say. A reasonable amount of time although, there is this thing called confidentiality that must be mentioned. In this case, I think it is worthwhile to violate the confidentiality of the dead because in reality, they have none. They are there in the common ground of experience and serve as teachers, as guides. Some of them have names inscribed on headstones and some do not. Some are only infant girls buried in the sand. It is so with Tufla which only means infant girl, it isn’t really a name but something they call babies before they get a name.

Tufla came to me as so many of them did, on an ordinary day. It wasn’t particulary hot in the Arabian desert and not particularly cold nor dry nor wet. The noises around the hospital were the same as they always were, rising and falling at given intervals and in various locations outside of clinics or rooms, groaning and laughing, TVs on all the time and the constant sound of shoes hitting against the smooth polished floors. It was such a day.

The woman sat in a chair alongside several others and a man sat near her but not next to her. It looked as if they were strangers. She was wearing the usual Bedouin garb, dusty materials and tattered hemline. She was holding a batch of scarves in her arms as if they were very valuable to her in some way. I didn’t pay particular attention to them as they weren’t for me, they had no child with them nor a baby. I entered the semi circle filled with faces covered in black and heads covered in checkered red cloths and called out to my patient, Tufla so-and-so. Tufla so and so.

The man and woman got up and made as if to follow me into the back. Perhaps, I thought, the woman had not been treated for a facial deformity and now had finally found a way to get some surgery but because of her hijab I couldn’t really tell and would have to take her in an examination room to see what the particular problem might be. The chart only said, infant girl, cleft palate, 2 years old. As was the usual, I received all sorts of medical lies like that. Doctors in the nether regions would often make something up because they either didn’t know a diagnosis or wanted to conceal the terminal state of a patient they wanted to dump on our rather major institution in Riyadh.

When we finally made our way to the back halls and into the room, myself and the rag-tag couple, I asked the two of them to take a seat in one of the three chairs. The man once again took a seat leaving one in between his wife and himself. The wife kept holding her batch of tattered scarves as if they were the finest cloths a person could purchase at one of the many material shops in the souks where a person could buy silk, taffeta, chiffon, handmade laces, suedes, beaded and brocaded wonders to the eye, linens, buttons, snaps, wedding cloths and wools. I asked her what her problem was and to show me her face.

She remained covered and her husband only grunted with some type of dissatisfaction. She then handed me her bundle of scarves which weighed only a little over two kilos and contained something that felt like sticks. I laid the batch of scarves on the table and gently began unfolding them revealing a tiny bag of bones with no expression and listless movements that looked unlike breathing. The nose was covered with dried mucous and the face could have been the face of an octogenarian. Tufla then, was two years old. She weighed in smaller than most newborn babies. She was being starved to death.

As I started interviewing the parents (to whom I wish no disrespect as they are merely products of a given society at a given time on this planet with curiously definable features) the father started insulting his wife in the worst of ways calling her a cow, then calling her a dog. Obviously he thought it was his wife’s fault for having produced such a thing as little Tufla. I cautioned him not to do it in front of me or ever, that he was discussing his wife in her presence. Thankfully, he didn’t say another word.

If only they really knew, the two of them, whose fault this actually was. There is a myth in some remote parts of the world that a baby without a sealed palate will certainly die if it ever sucks from a bottle. So Tufla was never offered a teet, a breast or a nuk. Nothing but a tube that was inserted into her stomach via her nose every once in a while whenever the family could make it the 25 miles to a local Bedouin hospital in the north. No one ever told them how to insert the tube and no one asked if they had a car. No one told them that if that tube came out it had to be reinserted within a few hours for the next few ounces of milk to be given. Tufla apparently went for days without food. Perhaps weeks even. It is a wonder that she made it in wrapped in those scarves. Truly a wonder but I think that she must have wanted to meet me.

I convinced old Doc Sakati to admit Tufla to the hospital for a few days. She is the famous doctor who defined Sakati-Sanjad syndrome along with her long time associate Dr. Sanjad. A famous woman in her own right. It wasn’t the only syndrome she defined but one of many. A grouchy old maid with a heart of gold. But convincing her to give up a bed for such a hopeless case as Tufla's wasn’t easy.

Once Tufla and her mother were in their private room, it took exactly twelve and a half hours to teach Tufla how to suck from a bottle and swallow. She wasn’t too aggressive about her intake but who could blame her, she could barely move, exhausted and all alone in her starvation. I think she took two ounces on her first go and maybe three on her next, roughly the amount of a newborn only a few hours old. Her mother finally removed her face cover so that I could see her and I discovered that she was older than me. For some reason I thought she must be half my age but I found out that she was a tough old buzzard from the desert with a pack a day habit. She must have smelled cigarette smoke on me and immediately bummed a fag and a light. She thought I had worked a miracle but I assured her I had not. Of course, I didn’t tell her she had grounds for a malpractice suit if she had lived in North America because I knew that Arabs seldom sue, muslims are fatalists. They figure when it is your day, it is your day, quite literally and are wont to do anything to unnaturally prolong a human life. The irony of that is that once a muslim is on life support, on a ventilator, it is almost impossible to take them off because the muslims hate to interfere with God and God’s counterpart, Doctors.

Tufla stayed for a week or two and Dr. Sakati tried to discover a new syndrome to name in poor Tufla. Something grand like costo-vertebral-mandibular or perhaps a case of fronto-facial-cranial-dysplasia, but to no avail. Sweat tests and urine analysis, chromosome counts and MRIs, all of it came up absolutely normal save for an elevated BUN and creatinine from constant, prolonged dehydration. It was that Tufla was a boring case of neglect with the name of a nobody.

When Tufla left the hospital I helped her mother to pack a few supplies, some extra bottles and nipples, some diapers for the trip back into the dry desert from which she came. I truly thought I would never see them again and wished them well, hoping against hope that they would return for the appointments I had arranged for them with various services, nutrition, pediatrics, genetics, all the usual.

I waited and waited and waited. They skipped the first appointments so I made some more and contacted the hospital in the north to locate them and give them the information. Six months passed before they returned.

Tufla had gained only four or five hundred grams. She was nearly three years old by then but the same Tufla I had met before, listless and unaware. I knew I had to take her home. Just like a dog or a cat who has lost its way. I didn’t mention it right away to the father who had arrived with Tufla in her usual batch of worn-out scarves.

I called the social worker and then my husband. It took longer to convince the social worker than it did my husband, a man not prone to take in strays. But he did agree. He said I could have Tufla if I could get her away from her parents. Abdullah, the kindly social worker who also had a baby with a cleft palate agreed to help me convince the father but expressed that he really doubted the parents would agree to such a request. I only wanted to have her for six months I said. I could do it in six months. I could save this life. I knew I could. I could take a bit of vacation here and there, could teach my maid Yolie to help me. Yolie would agree because Yolie missed her own baby son in the Philippines. Anyway, Yolie and I agreed on everything from the supper menu down to the time she would have to leave my employ because of 9/11. Yoly was experienced in the hardships of the world and a good Catholic. I could even pay her more if I had to. I really felt I needed Tufla.

I returned to the room I had left the father in, telling him to wait that I had some arrangements to make. He immediately jumped out of his chair when I returned and entered the room. He told me in Arabic that he had something very important to ask me. I could hardly imagine what could be more important than the drastic and dreadful thing I was about to ask of him myself, to give his own child to me for safekeeping for a while.

I let him go first. I knew my question was going to put him into shock, perhaps even frighten him away. Then he asked me.

“Could you keep Tufla here in Riyadh for a few months?” In Arabic.

I was speechless. Completely speechless. I said yes. Absolutely. I called Abdullah right away from the telephone outside of the examination room where Tufla and her father were. When I returned to the room to ask him to accompany me to Abdullah’s office, I saw that his expression had faded from before. He looked defeated. Absolutely.

His wife, who had been waiting in a house near the hospital where the couple had spent the night with some distant relatives, would not agree to leave her Tufla in my care. I never saw them again. I saw Tufla’s name appear on my schedule of visits and waited for them to show up, watching her name come and go. At least they were arranging their own visits even though they never came in for them. Three months, six months, nine months. After nine months though, the name didn’t appear again on my computer lists.

I went to Abdullah. I knew but really, I had to hear it myself. I had to let go of that idea once and for all, just like you have to let go of the idea of a stray dog you see on the highway in the rain.

Abdullah dialed. He nodded and said a few things in Arabic to the person on the other end but all I could hear was meht, meht. The Tufla syndrome was finally over.