A Mother's View

Thursday Thuli took a four hour nap. I accomplished a lot and thought he was probably exhausted because the previous day we had run around town with Caterina and he had missed his an afternoon nap. Friday I put him down and noticed that I was once again able to get a lot done. When he finally woke Clement picked him up and said he was burning. I looked at the time - 3pm - and realized he had slept for five hours. We took his temperature and it was 103 under his arm. Clement’s final exams would start in a few days and he hardly had time to eat much less sit in a waiting room for a few hours so I called Caterina and she said she would be on her way shortly to take us to the hospital.

I imagined that we would spend a couple hours waiting to see a doctor, have a malaria test, receive medication, and return home. Instead, after paying we were led directly to the consulting room. I told the doctor that Thuli had a fever, was sleeping more than normal and had become quite listless on our way to the hospital. The doctor also noticed a slight bulging of his fontanel. He ordered a malaria test, a CBC, an IV drip, anti-malaria medication, and IV antibiotics. It took me a couple minutes to process that we were being admitted and then the gravity of the situation began to take root as a deep nauseating presence in my gut.

A nurse led us to the children’s ward and I wiped away a few tears as Thuli screamed when they put in the IV. (I have to say the nurse was very good to find his tiny vein under all that flesh.) They then led us to a crib which would be home for the next few days. The children’s ward at Tec Hospital (the public hospital located on the university campus) is smaller than the one at KATH - where I fulfilled my nursing registration requirements in Ghana – and also smaller than Kamuzu Central Hospital in Malawi but the set up is identical. The children’s ward at Tec consists of three patient rooms and a narrow room for the nurses’ station. In our small room there were eight cribs and two beds (for older children). Beside each crib and bed sat a small wooden chair for the mother and a small cabinet where she could store personal items. The ward had two doors, one opening to the main front hall and the other to the bathroom area, a stall with a single toilet and another room with a shower and a sink. A long screened hall with a bench flanked the ward and was used by the mothers and guardians during meal times and visiting hours. There was no place for mothers to sleep.

Caterina helped us settle into our bed and stayed with me a while to sponge Thuli and offer gentle reassurance before she returned to the house to collect essentials and dinner. That night there were six other sick children in the ward. All the mothers were consumed in the task of nursing their children. When I tried to ask the mother closest to me a question, she looked away and I realized that she did not speak English. I was too worried about Thuli to focus on any other details. Caterina returned with food and Osman, my Ghanaian nurse friend, also came by to check on us. Before she left, Caterina coaxed me out of the ward for a few minutes and encouraged me to eat while Osman stayed with Thuli. Once back in the ward, Osman helped me set up a mosquito net and then said goodbye.

I watched the other mothers prepare for bed, set up their nets, change into bed clothes (an exercise I found slightly comical since there was no place to sleep), brush their teeth, and then assume their positions for the night. Two mothers occupied the beds, one mother placed pieces of cardboard on the floor and laid down next to her baby’s crib, the others sat on their stools resting their heads on folded arms over the crib railing. I climbed under the net and into the crib with Thuli. It was just big enough to sit upright, holding him, and extend my legs. When the nurses rounded, they commented on my presence in the crib but I told them he had never slept alone and they allowed me to stay put.

It was a long night. I continually dipped the cloth in water and wiped Thuli. I watched the clock. I took his temperature. I prayed. The room remained brightly illuminated all night. Even hours after the first doses of the medications, Thulani's temperature soared. He slept on and off occasionally fussing a little with the cold cloth. The room was quiet but for an occasional cry and the soothing sounds from a mother. I dozed for a few minutes.

Caterina arrived first thing in the morning with breakfast and flowers and hope. She made me tea and sat with me while I ate. She sat with me while I waited for the doctors to round. She sat with me through my moments of panic. Clement arrived for a visit. I managed to express a bottle of milk and around 10am we left Caterina with Thuli while I went home, showered and took an hour nap. When I returned I found Celia and Katie (two other expats) at Thuli’s bedside. I relieved Caterina and inspected Thuli. First, I noticed he was even more listless than the previous day and when I took his temperature it was just as high. Then, I noticed that his IV had infiltrated and his poor little arm was three times its usual size and his little fingers were turning blue from the pressure of the tape (poor Caterina later told me that she had avoided even looking at the arm with the IV because it made her feel sick). I turned off the IV and Katie called the nurse. A couple young nursing students responded with a dull pair of scissors, so rather than wait any longer I ripped off the tape and yanked out the cannula. There was no reaction from Thuli to the manipulation of his arm.

I started sponging him again but he hardly stirred even when I touched the cold cloth to his abdomen (an action which previously made him cry). I sponged him fervently and felt myself quickly approaching the edge of sanity - feeling helpless, watching him suffer, wondering if the treatment was having an effect and what invisible assailant continued his vicious attack on my baby. I cried messily and felt the eyes of the other mothers on me. My healthy chubby breastfed two month old was not supposed to be this sick. I decided to submerge him in the cold water, since sponging him had had minimal effect. Katie filled one of my basins and I sat Thuli upright in the water and began pouring it over his entire body. After a couple minutes he opened his eyes and looked at me. Relief. I continued holding him in the water and talking softly to him. He gave me a weak smile (just the reassurance I needed).

Throughout our stay friends sent me text messages of encouragement and called with prayers. I felt completely overwhelmed at points by the suffering of my baby but I also felt completely supported and surrounded by love. Saturday night, an hour after giving Tylenol, I felt his temperature start to peak again and feeling myself start to panic I whispered a prayer for strength. Then, at 10:35, I felt the fever vanish completely for the first time. I continued taking his temperature hourly and though it continued spiking above normal limits it never again reached anxiety producing heights. That night the nurses refused to let me sleep with Thuli so I slept on the chair leaning over his crib.

Sunday morning. Easter. Celia arrived early to allow me another two hour break for a nap and shower. That day passed uneventfully. Ernest and Ethel visited. Dr Annie, from the maternal and child hospital where I had volunteered, also visited. Thuli had periods when he acted completely normal. That night though he developed a rash over his entire body and when my adrenaline began pumping I called Caterina and Smart who again offered reassurance.

As Thuli improved I was able to notice the other children and mothers around me. We had moved cribs on Saturday and the mother who was originally next to me was one who sat on her chair day and night. The nurse had told me that the baby was also only two months old, but compared to Thuli he was very small. He cried incessantly. He had an IV connected to his foot and a tube draining the contents of his stomach from his nose. Like me, his mother sat with a bucket of water and sponged him constantly. When she passed the cloth over his face he would lick at it furiously, like a man dying in the desert. She had another small child, a boy around two, who was constantly pleading for her attention and running underfoot. I did not know how many days she had been there before we came but I could see that her strength and patience and resolve and hope were severely weathered by exhaustion. Evenso, when her baby would cry she would pick him up tenderly and kiss him and whisper to him. Sometimes he was silent for a few minutes. She did not speak English and I did not see her speaking to the other mothers. Her face seemed impassive but her eyes contained deep sadness.

Sunday night she broke. Bent over the crib, she began sobbing. I immediately put Thuli in his crib and went to her. I put my hand on her shoulder and rubbed her back while she cried over her tiny sick thirsty baby who would not stop crying and her little boy who wanted his mother. I sniffed back my own tears now truly understanding what was at stake and all the love involved. After some minutes she gestured to his penis and shook her head, I asked her if the nurses knew and she nodded. I went to tell the nurse that she said he was not urinating and the nurse said that the boy had not passed stool for several days even after an enema and now was no longer passing urine. The nurse said that the surgeons would see him Monday morning. I went back to her and stayed with her until her tears stopped falling.

Her little boy had an intestinal blockage, most likely intussusception – a condition in which the intestines telescope into one another. Some cases resolve spontaneously, some cases resolve with an enema, and other cases require surgical intervention. If not rectified early on, the diminished blood supply to the affected bowel will eventual lead to bowel necrosis and then sepsis and death. If untreated, death will occur within two to five days. Three days had passed since we had arrived at Tec, I don’t know how many days they had arrived before us.

Monday morning the surgical team arrived early and the boy was taken from the ward. Several hours later the mother and child returned. I went to her and she smiled a smile of relief. The other women nearby told me that it had gone well. The baby had a large bandage around his abdomen and appeared to be stable – calm and breathing regularly.

The neighbor of our new crib also captured my attention, a young mother with a very tiny very wasted very lethargic little girl. The mother spoke English but she did not talk much except to her own mother and sister who took turns staying with her. Her husband came during visiting hours and told me that their daughter was two months old (exactly one week younger than Thulani). She had stopped nursing on the breast and so they brought her to the hospital but in hospital she became progressively weaker. She had a nasogastric tube and the mother expressed breast milk for the nurses to feed her daughter. I asked the father how many times a day she was being fed and he said four. I was horrified and told him that infants need to feed every two to three hours, I suggested that he talk to the doctor. Over the next couple days I noticed that the feeds increased in frequency. During the Monday morning rounds the young doctor asked how much the baby was receiving per feed. A nurse replied that they initially gave the baby 25ml at each feed but that it was currently up to 40mls. Again I was horrified to hear how little the baby was being given. The doctor then ordered 50mls per feed.

As Thuli improved, I saw no improvement in his neighbor. Her name was Kezia. Several times I noticed the grandparents looking over at chubby Thuli with sad smiles and I felt a terrible pang for Kezia’s mother who clearly also noticed their wandering glances and would occasionally turn to look at Thuli over her shoulder. She was so incredibly tender with her daughter, carefully bathing her, dressing her in frilly little dresses to cover her wasted body, wrapping her in a clean white cloth, covering her boney head with a little pink cap. Kezia barely moved. She blinked slowly. She never cried. She only occasionally made a slight hissing sound to clear her airway.

It is one thing to spend time in a ward as a nurse it is another thing to live in a ward for a time, fighting exhaustion, riding the emotional waves tethered to your child’s fluctuating health status and sitting next to other mothers hour after hour also suffering together with their children. It is a different experience to know the pain and fear associated with attachment to a fragile life and then to watch mothers around you hour after hour engaged in their private tender ministrations of love to their desperately ill children. It is painful. Yet as a nurse it is nearly impossible to accept that in certain situations you must only be a mother and must abide by the rules of that role in the hospital. I wanted to read Kezia’s file and discuss her case with the nurses and doctor but instead I could only ask the father questions and suggest questions he might pose to the doctor.

Monday night my exhaustion reached a new level. I literally woke a couple times during the night and could not immediately remember which country I was in or where I lived. At one point I was asleep on the bench outside when one of the mothers woke me to tell me that Thuli was crying. I went to him and began nursing. Through my haze I was aware of the nurses turning on the oxygen tank and after a few minutes I looked over towards the bed with Rashmu, the small sick boy, and saw one of the nurses pumping the ambu bag frantically with her left hand while holding something else in her right hand. I immediately put Thuli down and took over the ambu bag. Rashmu’s little body was already cold though a fire still burned in his head. I continued bagging for some time and started chest compressions but there was no response. He had no reflexes. The nurse said she could not auscultate a heartbeat. His mother watched from a few feet away. We stopped the resuscitation and his mother’s grief filled the room. She cried until her face was swollen. I hugged her and she held on tightly to me. After some time the small body was removed. The day began. Visitors arrived with breakfast for other mothers. Clement arrived with eggs and toast. Rashmu’s mother sat silently in her chair for a while and then slowly gathered her possessions and started walking out of the ward. Two other mothers took her bags from her and I ran behind to catch them with Thuli in my arms. I grabbed her hand and placed a little money in her palm. She started to say something then just hugged me and kissed Thuli.

That day more children were admitted and everyone from the original group, except for Thuli and his tiny neighbor, was discharged. The doctors decided they wanted to give Thulani seven doses of IV antibiotics and told us they would discharge us on Wednesday. No one knew definitively what illness tramped through Thuli’s body. One doctor thought it was meningitis, another thought sepsis, a third thought malaria. The initial labs all came back normal and no additional cultures or labs were done. The plan was simply to treat for everything and give enough medication to prevent any relapse.

Surviving the last two days and nights was a great mental feat. Each day someone came to give me a two hour break. Katie came Monday and Mariama came Tuesday. They are women I don’t know well but who immediately offered to help when they heard we were in the hospital.

Finally Wednesday arrived, Thuli received his last dose of antibiotics and I packed up our things. After a small internal debate decided that I could not leave without talking to Kezia’s mother. I made a list of everything I thought needed to happen in her care – daily weights, calculations for the calories she needed, checking the placement of her NG tube prior to each feed, checking for residual breast milk prior to each feed, having the mother exercise her joints, allowing her to suck the bottle for part of the feed rather than giving everything through the NG tube. I told her mother that I had been observing her care and had some thoughts about it and asked her if she would like me to speak to the doctor. I told her that I would not if she did not want me to. (Everyone knew by that point that I was a nurse.) She said she wanted me to talk him.

After rounds I asked the young doctor if I could speak to him for a few minutes and before leaving I told him that I did not want to intrude but I had had some thoughts about Kezia’s care. He was very receptive and when I finished going down my list, he asked me for my notes. I returned to Kezia’s mother and told her that I had talked with the doctor. She thanked me and we left.

It felt wonderful to be discharged. We were released from prison. When we got home around 1pm, Clement bathed Thuli while I took a shower and then we got into bed and did not get out until 7am the following morning. Now that Thuli had recovered and the rash had faded, my mind fixated on Kezia. I thought about her constantly. I did some research on the internet and created a sheet with formulas for the amount of calories needed, the volume of breast milk she should consume daily, and the expected daily and weekly weight gain. I wanted to return to check on her Thursday but I was still exhausted and did not want to return with Thuli, and Clement was writing exams. I wondered if I would regret not visiting.

That evening I came up with a plan. A visitor to another child on the ward had taken my number and had already called several times to check on Thulani. I called her and asked her whether she would take a letter for me to Kezia’s mother the following morning. She agreed. The next morning Becky came over and collected a letter I had written to Kezia’s mother along with the sheet of formulas. Becky told me that the mother was very poor and her friend had been sharing food with her so I added a few cedi and said a silent prayer. I then waited anxiously for feedback. After a few hours Becky called and said that Kezia had died and the mother had already left the hospital.

Here we are, grateful for Thulani’s recovery, and yet heart-broken after our bitter reminder of the unnecessary suffering that mothers and babies experience daily all over Africa in wards like Tec. Clement says this is why he wants to be a Pediatrician in Malawi, because children should not die like flies. This is why I became a midwife, to honor women and their children, to provide good care and let them know they are worth so much more than they are often allotted.