Photo: Caroline Trutmann/Save the Children
I share Andiswa’s story in honour and memory of, and as a tribute to, all those children from whom we’ve learned so much about caring better for children. This story represents a coalescence of many stories, heard through the process of mortality review.
“When I was nearly 6 month’s old, I died at a big, smart hospital far away from home.
This is the story of my short life. So much happened in my short life that sometimes I forget things, or I don’t understand them quite right. Please forgive me for this.
I was born at a big, bustling, smelly hospital.
I was very small when I was born, and my mother – who is very young – decided that she did not want me.
The doctor put a mask on me and blew air into my lungs, then put me in a place with machines and lights. I could not breathe properly so a machine had to breathe for me. I went yellow, so they covered my eyes. This didn’t matter much because I had no mother to look at anyway.
Then I got very sick. Soon my head started to swell, which was horrible because, being so little, my head already felt big to me.
During this time, somebody who I did not know, but who seemed very kind, decided that she would be my mother.
I was sent home when 5 weeks old but still very small. Nobody knew if I was developing OK, even with my big head. I, at least, knew that I was. When I was sent home, nobody gave my new mother a Road to Health Book, and they forgot to tell anybody important that I had been born.
I loved being taken into a warm and friendly family, and my mother and father cuddled me a lot.
After a week at home, I got sick, and very, very cold.
I was so sick that my mother could not feed me. My father took me to the big, shiny hospital near my home. A nice doctor saw me and was so worried that she phoned the children’s doctor. They thought I must have an infection.
I was still small enough to go to the place where babies should go but there was no room, so they put me in the big children’s ward where it was very cold.
The young doctor who saw me there was also very nice but she forgot to give me any medicines to fight the infection, which I could not fight on my own. The next morning, I was still cold – even though the nurses had put a big warm balloon around me – and so sick that I could not move. I couldn’t even open my eyes.
The children’s doctor came, and immediately started infection medicines. Even though I was so sick, I remember him saying: “I wonder if Andiswa has brain damage. I wonder how far we should go”. I did not know what he meant by that, but I knew my brain was OK.
Slowly I warmed up, and gradually I got better. The nurses and doctors were surprised at how demanding I got. If nobody was cuddling me, I protested loudly. My best times though were when my mother came to visit me. She was always so loving and gentle, and she would talk to me a lot.
One day, I heard my mother talking to the children’s doctor. She wants to study to be a doctor, but did not go to school for long enough. The doctor gave my mom the names of people at the university to speak to, to see if all her recent hard work and studying might get her into medical school. I wonder if she still wants to be a doctor now.
Because my head was still getting bigger, my doctors sent me to another big, smart hospital far from my home.
There the brain doctor put a tube into my brain, which was joined to a pipe that went under my skin to my tummy. My head felt much lighter after this, but there was now a lump on my head which was very uncomfortable to lie on, and I still wasn’t strong enough to move my head when it got sore.
A doctor put a needle into this lump just before I died.
After this pipe was put in, I was sent back to my hospital close to home.
The doctors made a special pillow for my big head, I continued getting better and started to grow nicely.
Me and my mom were so proud of me.
My parents and I were now getting more confident about going home, and soon we left hospital. I was 11 weeks old and weighed nearly 5 kg!
The doctor gave my mother a letter all about me, to keep. In this letter, she (my doctor) noted that my vaccinations had not been given.
I don’t know why she didn’t give me my vaccinations while I was in her ward. She (my doctor) also noted that I did not have a Road to Health Book. I don’t know why she didn’t get me a Road to Health Book.
I loved my days at home, but soon got sick again, with a cough. I struggled to breathe, and again got very cold.
I probably got this infection from when I was in hospital. My parents took me back to hospital.
I’m not sure how old I was now because the doctor forgot to write the date and time that I came, and then forgot to fill in that nice admission sheet which helps doctors to work out how sick I am, and what they should do for me. Maybe that’s why they only started putting medicines into my veins 3 days after I was admitted.
Luckily I did get better again, and my mom took me home on the when I was 14 weeks old.
This time the doctor not only forgot to check my vaccines and Road to Health book, but she also forgot to write the letter all about me.
I spent some wonderful days at home getting to know my brothers and sisters. This was probably the happiest time of my life. It is sad that it was not for very long.
After three weeks I was admitted because again I got very cold and weak. I was so cross because I had been doing so well at home.
I don’t know why, but the doctors forgot to use that nice admission sheet that helps them look after us properly. Nevertheless, they gave me medicines for an infection and I got better.
When my doctor discharged me, he remembered to do my letter. But what I found strange was that he recorded that my vaccinations were up to date, and I knew that I had not received any. I even remember the children’s doctor asking him to make sure that I got them. He also noticed that I had no Road to Health Book, but did not get one for me. When you are as small as me, it is hard to understand these things.
Soon I went to the big, smart hospital for a check-up. The brain doctor said I was doing fine.
I was happy at home for a few days, but became sick again, can you believe it? It’s not fair when someone as small as me gets sick so often. All I wanted was to be at home to be loved and cuddled and played with.
HOSPITAL: Outpatient department
Some days later, my parents had to take me back to the hospital. I was hot and I cried a lot when my head was touched. My parents told the doctor about this.
The doctor in outpatients noticed that I was breathing so fast, at 100 breaths per minute, which sounded fast even to me. I could also FEEL what it was like, so I don’t blame her for anything.
This nice young doctor thought I might have a ‘blocked shunt’, or ‘meningitis’.
I didn’t know what that was, but wondered if it could be to do with that pipe that they put in my head. The doctor told my parents I had an URTI (I also didn’t know what that was but it sounded really scary) and gave them some syrup for me to take at home, which tasted terrible.
But I was too sick to drink it properly anyway.
The next day was a Saturday, and because my parents were worried that I wasn’t getting better, they took me back to my hospital, straight to my ward. The doctor on duty got called to where other babies are even sicker than me. After waiting a long time, my parents took me home. I wish they’d waited longer, but my brothers and sisters needed them too.
On Sunday my parents were very worried, so my dad took me back to my far away brain doctors. The first thing the doctor did – I did not know him from before – was put a needle into the lump on my head. He asked my dad to wait.
After six hours, it was getting towards evening. My dad asked about the test. The doctor told him it was not ready.
My dad explained he (my dad) has epilepsy. I don’t know what that is, but it does mean that he cannot drive our car in the dark. He had to go before it got dark.
The doctor made my dad sign something called an ‘RHT’ and we left.
I know now what an RHT is, and wonder how it can possibly help sick children?
The next day, I was still not better, and at home my body started jerking.
My parents took me back to my hospital, the one close to my home. The doctor in Casualty sent me up to my ward in the evening. Another young doctor saw me in my ward. I was still very hot, but at least my body wasn’t jerking any more. That had made me very frightened. The doctor thought I had a ‘febrile convulsion’.
Once again, the doctor did not use that nice admission sheet which helps them work out how sick children are and what to do with us. I find this so hard to understand and wonder how many other children have suffered because of this.
She phoned the senior doctor on duty who said she would come and see me, but didn’t. I wish she had. They didn’t give me any oxygen, even though I felt I needed it (I was quite an expert by now, you see!), and they didn’t give me any medicines at all.
None of these doctors found out from my parents that I had been to see my brain doctor on Sunday. And I even had a little plaster over my head lump where the doctor had put the needle in.
I stayed very hot which, in a way, felt better than the terrible cold I had felt the other times I was sick.
Somehow I felt more alive…
The next afternoon the children’s doctors saw me at around lunch time. I could hear that they were very alarmed at my condition, and that no treatment had been given to me. Medicines to fight infection were given, and they asked my doctor to put a needle in my head lump to see if there was infection there, and to give me stronger medicines.
This doctor went home before finding out about my head lump water test.
At one o’clock the next morning the young doctor on duty found that there was infection in my brain pipe!
At last they had found out why I was so sick. The doctor prescribed a stronger medicine, but the nurses were too busy to give it to me. I could hear them struggling with another very sick child all night.
The next morning, before coming to the ward where I lay, all the doctors went to a meeting to discuss other children’s deaths. The young night duty doctor stayed with the other sick child.
Not with me.
When my children’s doctor came after the meeting, he sounded even more alarmed than the day before, both about the infection in my brain pipe, and because I had not received any medicine.
Even though I was now very sick, I heard my children’s doctor ask the young doctor to phone my brain doctor to tell them about my brain pipe. The brain pipe doctors knew already that there were germs in my pipe.
(Some days after I died, the doctors discovered that the germ was something called Haemophilis influenza. These are such big words for a little person like me, but I do remember the nurse telling my mother about the vaccination for this).
This was when my doctors first heard that I had been to my brain doctor 3 days ago, and that my father had “Refused Hospital Treatment”. So that’s what RHT meant! It sounded so cruel to be saying that about my father.
It felt like I was getting sicker by the minute, and I was so afraid. I could not even be cuddled because I was so sick.
Still, I could hear that my children’s doctor was very cross, and the brain doctors said I should come back to have my brain pipe removed, right away.
That night, while in the care of my brain pipe doctors, I died.”
“I know that there are other Andiswas and Franks and Siphos and Marietjies, and I do believe, that through us perhaps, things can be better for other children.
Thank you for listening to my story."
This blog is part of four-part series introducing the Healthy Newborn Network’s Mortality Audits topics page. This new page seeks to give maternal and newborn health practitioners the latest tools, guidelines, resources, news and blogs on death auditing.
NOTE: The above photograph is not a photograph of Andiswa.