This is the story of Miranda, an eight-year-old girl who died suddenly while playing with her brother and cousin. The narration below has been written by Miranda’s father and shared with me by her mother, Njeri Orora. Miranda’s parents are sharing this story to create awareness about the condition that led to the sad demise of their daughter.
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“Miranda was born in 2013 and had been healthy all through. However, in 2021, she collapsed in school. The school nurse called and informed us of it. She asked us to take Miranda to hospital where we saw a paediatrician who checked her and told us she was fine.
Miranda fainted again after some time but this time we didn’t take her to hospital.
In July 2021, we moved to Bungoma where she joined a school and started classes. After a few weeks, she fainted in school and we were called. We rushed there and found she had already come round. We took her to hospital and the doctor told us to observe her for a while.
When she fainted again after about two weeks, we took her back. This time the doctor asked us to do some tests. We went to Kisumu and the tests were done. They all showed she was okay.
She again fainted for the third time. We went back to hospital but did not get the paediatrician. The doctor we found prescribed an epilepsy drug. I asked my wife Njeri to pass by a different hospital and see a paediatrician. The paediatrician ruled out epilepsy and asked us not to give it to Miranda.
What was triggering Miranda’s episodes?
When she collapsed three days later, we were advised by a doctor to take her to a paediatric neurologist. We went to see one in Nairobi who performed some tests and ruled out epilepsy. He however could not figure out what was troubling her, so he asked us to go again after one month.
She fainted once in that period, and we noted down all information we could gather on how it happened. Miranda had never collapsed at home, so we did not know for sure what happened during the fainting episodes.
When we went back, the doctor again did some tests and told us he could not find anything wrong with her. His advice was that there had to be a trigger, so we needed to find out what that was and then mitigate it. Thankfully, the episodes went away and did not recur.
Schools closed on 4th March 2022 for a long holiday to allow final year candidates in primary and secondary schools to sit national examinations. The children had missed their grandmother very much and we took them to Kitale over the weekend.
Our son’s fifth birthday fell on 19th March and he had asked us to hold two birthday parties for him: one in Kitale and one in Bungoma. He however changed his mind and decided he would not be coming back to Bungoma.
Njeri travelled to Kitale that week while I travelled on 19th March. We bought a birthday cake and took the children out to a local hotel. They spent the afternoon swimming and jumping on a bouncing castle. Miranda in particular enjoyed the swimming bit. She was not a good swimmer but what she lacked in skills, she more than compensated for with enthusiasm. We had to drag her out of the swimming pool. She went to the changing room and spent a long time. Njeri went to check on her and found her just staring at the older girls. We had lunch where they all asked for their favourite dishes. It was generally a day spent having fun.
In the evening we went back home, danced and cut the birthday cake. That night Miranda slept with her mum. They talked late into the night.
The last goodbye wave
In the morning, we all woke up and had breakfast. Njeri and I left Kitale for Bungoma at around 11am. The kids were all watching television as we left. Miranda was so engrossed that she didn’t reply to our goodbyes. We had to call out to her again and she dismissed us with a wave and a shouted goodbye. This was unlike her, usually she would escort us to the gate and sometimes hitch a ride to the main road first, but we didn’t read too much into it.
On the way back we discussed how her health had changed and we agreed it must have been the change in climate. We got to Bungoma some minutes after midday. After a few chores in the house, we left for town.
The shattering phone call
At around 6pm I received a call from Kitale. I handed over the phone to Njeri since I assumed she was unreachable on her phone and the caller was looking for her. The caller was her mum and she asked what we do when Miranda faints.
Njeri explained and asked for details of what had happened. After a few calls we were asked to immediately go to Kitale. We left without even paying our bill, jumped into the car and drove off. Luckily, I had fuelled earlier in the day and did not need to stop anywhere.
On the way, Njeri kept calling different people asking them how Miranda was.
Just as we got to Sikhendu, she called a family friend who informed her that Miranda had passed away.
We stopped at the bus stop to compose ourselves then drove off. We got to hospital and found her lying dead on a bed in a consultation room. Later we were told what happened.
Miranda was playing hide and seek with her brother and cousin. Muthoni, Njeri’s sister was in the main house when the two boys came calling her that Miranda had fainted. It is Cruz who had found Miranda. Muthoni rushed to where she was and tried resuscitating her. She then called a neighbour to come and assist her. When she saw that Miranda was not responding, she carried her and rushed her to hospital.
At the first hospital, she was told Miranda had no pulse. Not believing it, she took her to a second hospital where she was told Miranda had passed away. She still didn’t believe it and again took off. At the gate she met her mum who put them in a car and they drove off to a third hospital. Here again she was told Miranda had passed away.
We could not understand what had happened. A child that we had left healthy and full of life at 11am was dead by evening. We started making funeral arrangements and booked an appointment for a post-mortem.
Cause of Miranda’s sudden death
The report indicated cause of death as ‘sudden cardiac death secondary to hypertrophic cardiomyopathy.’ In her case, the left ventricle had thickened, and her heart was unable to keep up with her body’s requirements. All the time we were checking to see if her neurons had an issue, it was actually her heart that had an issue.”
Njeri adds on to her husband’s narration by saying:
“If you know of any parent, whose kid might have fainted or convulsed and their kid’s electroencephalogram (EEG) is normal, kindly ask them to visit a cardiologist for an electrocardiogram (ECG) test. (EEG is a test that measures electrical activity in the brain using small, metal discs (electrodes) attached to the scalp. An ECG on the other hand records the electrical signals in the heart. It’s a common and painless test used to quickly detect heart problems and monitor the heart’s health).
When you see a kid faint at school and nothing is detected by a neurologist, kindly visit a cardiologist. This heart condition hypertrophic cardiomyopathy is mostly confused with epilepsy, anxiety and hysteria. No parent should go through what we are going through.”
Thank you, Baba and Mama Miranda, for sharing your story. We wish the Orora family God’s strength and comfort during this difficult time, and thank them for telling their story, which is helping raise awareness about the condition.
If you have a story you’d like to share, email me at firstname.lastname@example.org
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