Cerebrospinal fluid is saltwater, her gynae explained. And that this saltwater is manufactured inside ventricles, which are these hollow spaces in our brains. He was a middle-aged man with ageing eyes and thick knuckles. He looked like he would fall asleep talking. Earlier, he had rubbed ultrasound gel on her round belly and ran the knob thing over it and studied the monitor intently. A little more intently than she would have liked. But you always know if there’s a problem. It’s instinctive. He had wiped off the gel with a tissue in silence and tossed it in a waste basket. Soft music played in the background, something jazzy with no words. The soft trumpeting of a saxophone.
She was five months pregnant.
As he washed his thick-knuckled hands at a sink in the corner, he had announced, over his shoulder, that there seemed to be a little anomaly with her baby. Anomaly. Like they were dealing with figures here that didn’t add up. Anomaly. When he sat back down, pen in hand, he said that it seemed the baby had what he suspected was hydrocephalus. She gasped a little and put her hand on her belly, as if she didn’t want her baby to hear those words. He drew a head on a notepad and he explained the saltwater. She was half listening. She felt like she had been hit with a brick on the back of her head. Hydrocephalus? Why would her baby have that? The drawing of the head on his notepad looked like the head of an alien. He was a better gynae than he was an artist.
“…it flows around the brain and spinal cord, cushioning them, sending nutrients to the brain and removing waste, “ his pen ran over the notepad. “But you see if the flow of CSF is blocked here, it’s called obstructive hydrocephalus. That’s what causes the head to increase in size because of this fluid and because…” She turned away from his notepad and looked at a white wooden sculpture of a fetus in a womb and wondered why nobody had thought of making a black wooden sculpture of a fetus. Or even a brown one. She looked around his office at a cheap painting. “…but not to worry, we will run a few more tests…”
On her way home she Googled hydrocephalus in babies and read up on it. She clicked on images and stared at the babies and their heads. She put away her phone and sobbed. When she got home she made some tea in the kitchen and carried it to the living room. She suddenly felt lonely. Her feet looked slightly swollen but not as swollen as her heart felt for the unborn child.
When her husband came home late in the night, as he was accustomed to, she was still up reading about the condition, worrying about the condition and talking to God about the condition. He looked surprised to find her still awake. He had missed a button on his shirt. He was having an affair. She told him what the doctor had said. She asked him if he was going to stay with her now that their baby was not going to have a normal life, a normal head. He sat on the bed and said, of course I will stay with you. Why would I leave? We will be in this together. All the way. Then he went into the bathroom and she heard the shower come on.
In the following few weeks she did a 3-D scan and a 4-D scan and they all confirmed her fears. She was going to have a special needs child. “ I thought it was something I could reverse, something God could reverse, so I went to see a number of pastors to reverse it through prayer.” They touched the crown of her head and with eyes closed beseeched God to intervene. They cast their eyes skyward and asked God to be merciful. They spoke to her in sagely murmurs in their offices that smelled of the Corinthians. They prayed together. She prayed alone.
On the night of delivery she called her husband as she counterchecked the contents of her “overnight bag” that she had packed and unpacked many times for this moment. There was no answer. She switched off all the lights in the house and left. At the hospital she changed into those hideous hospital gowns that leave the breeze blowing your bare ass. (As if sickness isn’t undignifying enough). The nurses were nice, though, they asked her questions, took her vitals, asked if this was her first and told her, ‘don’t you worry, everything will be just fine.” In the delivery room men and women with gloves and masks walked all around her; pediatrician, gynaecologist, neurosurgeon, nurses going about their great tasks of touching things, setting things in complete silence but in a beautiful synchrony. They looked like worker bees. Machines beeped. Rubber gloves snapped like they do in Grey’s Anatomy. She stared at the ceiling which was white as snow. Someone asked where her husband was. She was embarrassed to admit that she didn’t know. The doctor looked at the clock on the wall and said, “well, then, shall we?”
They injected her and half her body went numb. Then they went below her, sliced through her and someone with bloody gloves lifted her up. “I remember thinking, why isn’t she crying? Why was my baby not crying? I panicked. I started crying, why isn’t she crying? Why isn’t she crying? Then I got really agitated, trying to sit up, trying to grab my baby and the anaesthetist was holding me back, trying to calm me down and I don’t know what the man did but suddenly I started slipping under and then I don’t remember much else. I woke up in a different bed.”
“Where is my baby?” She asked a nurse groggily. The nurse smiled and said, your baby is fine; she’s in the NICU. That’s an ICU for babies. It’s a horrible place if you ever saw one; these tiny little babies with tiny little feet and hands, tubes coming out of them, eyes closed, fists folded, fighting for their lives. Just poor little things who don’t deserve sickness. It’s enough to drive you insane with sadness and profound helplessness. She asked to see her baby, please bring her to me. The nurse said they couldn’t, that she was on machines. She started sobbing, then she started crying. Can I just see her please? The nurse said okay sawa, so she wheeled her into the NICU with all those transluscent chested babies, just fighting to stay on this earth, their small hearts carrying all the hearts of their mothers and fathers.
She held her baby in her arms for the first time. She could see her ribs move. She was breathing. She stared at her head and she teared with a love that surprised her. It’s like all her insides were suddenly filled with bright yellow. A warmth that would not die. She wanted to touch her small feet gently and whispered to her, mama is here, mama will always be here. It’s you and me. “Her head was so big. I cried so much. I couldn’t stop. I cried so much the nurses had to take me out of there.”
A neurosurgeon came to her bedside later. He didn’t look like a neurosurgeon. He looked like a guy who works at the Treasury. Or a contractor. He wore brown shoes. A good sign. Men who prefer brown shoes over black ones tend to be more competent. I read that in a book. He sat on a chair next to her bed and walked her through the surgery they would perform on her baby again. It’s called a shunt surgery, he said, and it involves surgically implanting a flexible tune into the brain and spinal cord to divert excess cerebral fluid from the brain. When she was done asking her questions he stood up and smiled broadly at her. “Well, a nurse will come get you to escort your baby. I think the hospital procedure requires a parent to escort the baby to the theater, is your husband here?” She didn’t know where her husband was. She was as clueless as the neurosurgeon.
A wheelchair was brought. A nurse said, “we haven’t been able to get a hold of the father.” She said, it was okay, she would escort her baby. Baby was brought. She was asleep. Her C-section hurt like a mother. [You have to read that line in Samuel L Jackson’s voice]. At the doorway to the theater the neurosurgeon asked that they all pray. They all bowed their heads, the whole motley of nurses and doctors and he led the prayer. “I was crying because I was handing my baby to these people I didn’t know and they were going inside the theater with her and I didn’t know what would happen to her or if they would come out with her. But the lady wheeling me told me, ‘don’t worry, many babies have gone in there and many many babies have come out alive. Yours will live.” She was later told that they found two holes in her baby’s heart.
That evening her husband rocked up with his friends. Thick as thieves. He had been drinking, celebrating the life of their newborn perhaps; a baby he didn’t know was alive or dead. He stood by her bed. He blathered and blithered. He blinked a lot. His friends waited outside her cubicle. They looked like hooligans who had left a rowdy match they had lost. “I asked him where he had been and why he didn’t see it fit to be here for the birth of our child. Did he not know that she had been in surgery, four hours of surgery and where was he? He said I liked making noise even in a hospital. That this was not the right time to cause a scene, that I was unwell and I should focus on getting well.” He saw the baby for ten minutes and they climbed back on their flying brooms and left.”I was in the hospital for seven days and he came around only twice. When being discharged the pediatrician wanted to talk to both of us about our child and the journey ahead with a special needs child but he wasn’t there. It was a bit embarrassing to be honest.” She felt like the weight of his irresponsibility was hers to bear.
A nurse helped her to the car with the baby. She took a taxi home. The taxi man – a stout bald guy- helped her with the baby and her luggage into the house. Her C-section wound throbbed. At 1am, her husband stumbled home drunk. Where have you been? She demanded. They argued. He swung his arm and slapped her across her face. This is something he had done a few times before and apologised with flowers and chocolate and tears and promises. She thought he’d change. She believed him when he said he’d change.
Not long after this she discovered that he was seeing a girl who was married to a guy she knew. One day she called the girl’s husband and said, “your wife is seeing my husband.” The guy said, “I know. I can’t do anything about it. I’m jobless, she does whatever she wants.” What could he do, leave?
She hired a househelp. A girl from Webuye. Strong. Sturdy. She sang around the house like a canary. Made a mean ugali, the type that stuck to the ceiling. [You have to be from Western to understand this]. She started work on a Friday. On a Saturday she asked her, “mum, ulisema uko na mzee, kwani anafanyanga inje?” She mumbled something because how do you tell her the mzee disappears on Fridays and comes back on Monday? On Monday morning the help told her, I don’t think this is right. Whatever is going on here. And it’s not healthy for you.
“I really cried. That this girl, an outsider, would see the status of my marriage and feel moved enough to comment on it. I made a decision that day, that I had had enough and I was going to concentrate on my baby and my peace of mind.” Because what could she do, leave?
“When you have a special needs baby, you are always fighting for them. You have deep hope. You can’t lose that hope. You see every specialist you can, you follow all leads. You meet doctors who discourage you with statistics and some who fight with you. You read literature on their condition. You join support groups. You pray. I focused on that.”
Speaking of prayers. When her baby was six weeks old, her friend mentioned a place called Vincentia Prayer House for Catholics. Her friend mentioned that she had said a prayer for her baby there, asking God for a miracle on her behalf. That evening she called her and said, “The priest said that someone in there asked us to pray for a baby with holes in her heart. If you know the mother, go tell her that her baby is healed.” She thought, yeah right. But hope. So she went to her pediatrician who did tests and confirmed that the baby no longer had holes in her heart. She was gaining weight, feeding well. “I couldn’t believe it, Biko. So I went to the pediatric cardiologist and he confirmed the same. She said in all her years in the profession she had never seen anything like that. It was a miracle.”
Babies are fighters. She fought cortical blindness. She went through numerous surgeries and therapies. She raised her head in four months whereas normal babies do it in one month, but she raised her head. She underwent speech therapy. Her milestones are all delayed but she slowly gets there when she gets there. Having a special needs baby with hydrocephalus means people stare at her. People stare at her in lifts, in malls in the neighbourhood. Some ask, what’s wrong with the baby? She tells them nothing’s wrong with the baby, she was born this way. “Whereas people might see her as having a problem, I see her as normal. I love her passionately. She has given me strength to love and to defend her and to love myself. It’s expensive yes, the insurance covers hospital visits yes, but all the speech therapies and other therapies are out of pocket expenses. Sometimes it breaks my heart to see kids younger than her walking but then I catch myself and am happy she – at two – can hold onto things, crawl, walk while supporting herself on tables and chairs and she follows instructions. People don’t understand her. People make comments, sometimes hurtful ignorant comments. House helps quit on you because of her condition. Nobody can love her like you do.”
The lady her husband was seeing died suddenly. Then her husband lost his job. Early this year she left the marriage. She realised the whole marriage was in slow decay. She’s in her mid thirties and she’s starting the journey again, only this time she isn’t alone, she has her baby. She fears for her. She fears that she will be bullied at school. She fears that she might struggle with school. That she will stick out, that she will never blend in. She fears dying before her, leaving her behind to a cruel world that doesn’t understand or love her like she does. When she prays she often tells God, ‘you can’t take me out of this earth because nobody will take care of her like I do.’ She fears losing her finances because her baby needs them. She fears if she will ever get friends. She fears that one day she will ask what happened to her daddy, why he never calls or shows up and if he rejected her because of her condition. She fears that she will be hard on herself because of a fault that isn’t her own.
But with her fears also come the irony of immense love.
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