By Neo Kolane

Sunday, September 24 started like any other for me – easy and laid back.

However, my afternoon siesta was suddenly disrupted when I received a shattering WhatsApp message that left a sour taste in my mouth.

The message slapped me so hard like a cricket bet, leaving me emotionally paralysed and stranded.

It was from Lerato Tlakane Mavie telling me that her baby, Tlhohonolofatso Mavie, whose plight I had highlighted in this publication a few days before, had passed away at Netcare Sunninghill Hospital in Johannesburg, South Africa. The Lord had called her home earlier that day at 03:45.

The heart- stabbing news devastated me to the depth of my heart. It left a lump in my throat. I had hoped, like her mother Lerato, that the toddler would live to see more years.

Journalists rarely get emotionally attached to their stories and whatever they write is all part of their daily work. They write stories and submit to their editors and move on to the next one.

Baby Tlhohonolofatso’s story was different.

I received Lerato’s text at around 4:33pm and it took me almost an hour to process the news. I had no words and did not know what to start to console the grieving mum.

I immediately called my editor to share the devastating news of Tlhohonolofatso’s death. She was diagnosed with biliary atresia three months after her birth on January 18, 2022. Biliary atresia is a childhood disease of the liver in which one or more bile ducts are abnormally narrow, blocked, or absent. It can be congenital or acquired.

The symptoms of biliary atresia usually appear by the age of two to six weeks and include a yellowish coloration of the skin and whites of the eyes, abnormally pale stools, and dark urine. Infants may also have a swollen stomach and/or abnormal enlargement of the liver.

Overall survival with a native liver (not transplanted) ranges from 30-55 percent at five years of age; and 30-40 percent at 10 years of age. Experts say approximately 80 percent of patients with biliary atresia will require liver transplantation by the age of 20.

Perhaps it was the thought of an innocent soul battling with such a chronic disease and hanging precariously onto dear life that attracted me to Baby Tlhohonolofatso. Her bravery was awe-inspiring.

News of her death has affected me as I had hoped that she would live to see more years and be fit enough to go out and play with other kids.

After gathering strength, I eventually texted Lerato at 17:19 saying, “I’m so sorry, sending your family positive thoughts and lots of prayers. May her beautiful soul rest in eternal peace.”

Her struggle and death have traumatised me. Tlhohonolofatso needed an urgent liver transplant and her condition was deteriorating by the day. However, despite this, the Mavie family was optimistic that she would eventually get help and survive. But God had other plans!

I had hoped that my story highlighting her plight would help the family get donations for her to undergo the required surgery.

As I write this, I can’t stop thinking about the departed young soul.

Dealing with the death of a loved one is something that we cannot get used to, no matter how many siblings or close relatives we lose.

As Dutch writer Marieke Nijkamp says, “Death is a thief… It slips into our lives and steals what we care about most. It breaks us, and even when we piece ourselves together again, the pain remains.”

I shudder to think what could be going on in her mother’s mind right now and how she’s trying to cope with the grief.

Although I never got to meet Lerato as we did our interviews over the phone, I now wish I had.

I strongly believe that had Tlhohonofatso been attended to urgently, she would still be with us today and maybe celebrate her second birthday in a few months from now.

Rare diseases should be taken seriously.

The Mavie family approached the ministry of health and they were told that there are no funds for international referrals; Tlhohonofatso’s condition could only be treated in India.

There are no specialists in Lesotho to deal with rare conditions and the ministry should be held liable for this. There are many other families out there who have lost their loved ones owing to this lack of specialists.  How do our government authorities manage to sleep at night given such a situation?

theReporter learnt by September 9 that the Tlakane family had raised M434,419.40 towards M945, 336. 00 required for the urgent surgery and accommodation, visas and air tickets to India.

The family had opted for Rela hospital or Apollo because they are cheaper compared to South Africa, where the surgery reportedly it costs R 1,987,415.59.

Tlhohonofatso will be laid to rest tomorrow at 7am.

Nthabeleng Ramoeli, founder and chief executive officer of Rare Diseases Lesotho Association says children with rare conditions are always in hospital their entire lives.

Even if they undergo operation, they still need to go for regular check-ups. That, at least, we should have done for baby Tlhohonofatso.

I’m angry at our health system, angry that we didn’t do enough as a people to save the young life.

We should bury our heads in shame.