Little girl tastes for the first time
Lari-Chel Massey was born without an oesophagus and has had many brushes with death. Now an operation has left her able to enjoy food for the first time
IT WAS just a mouthful of ice cream but to her parents it seemed like nothing short of a miracle. Their little girl had waited four years before she could swirl the creamy treat in her mouth and feel its delicious coolness sliding down her throat. Mom and dad watched her lick the cone with a mixture of pride and delight. “She didn’t say anything,” Lizelle Massey (35) recalls. “She just started giggling then licked the ice cream again.”
But little Lari-Chel Massey has had to walk a long, hard road to reach this point.
She was born in 2013 with a severely underdeveloped oesophagus (gullet) and hadn’t been able to eat any solid food – until a recent operation changed her life forever.
Professor Peter Beale, a paediatric surgeon from Johannesburg, removed part of Lari-Chel’s large intestine and created an oesophagus for her.
The large intestine is made of similar tissue to the oesophagus, making it the ideal substitute, Beale explains.
Lari-Chel handled the operation surprisingly well, he adds. “She was in hospital for just seven days – an unusually short time for this procedure.”
Lizelle and her husband, Leon, were warned their daughter would probably have to stay in hospital for seven weeks, but she astounded everyone – as she has done many times in her short life.
“She’s a tough cookie,” Lizelle says proudly.
Over the years Lari-Chel – who also had a hole in her heart and just one kidney at birth – has endured numerous operations and setbacks.
Her parents were repeatedly advised by doctors to say goodbye to her “because there was no guarantee she’d live”, Lizelle says.
But not only has she pulled through, the five-year-old recently started school and is in Grade RR at Dr CF Visser Primary School in Bloemfontein. She’s considerably smaller than her classmates – most kids her age weigh 20kg yet she tips the scale at just 12kg. But now that she’s finally able to eat normally she could catch up soon.
Lari-Chel also attends an exercise class twice a week in which her coach, Jenny van der Wath, helps her to work on her strength, balance and muscle development.
We go along to a session with Leon, Lizelle and their other daughters, Monique (11) and Le-oné (2), and watch as Lari-Chel clambers over the equipment with Jenny’s help. “The past five years haven’t been easy,” says Lizelle, a bookkeeper. But she’d do it all again in a heartbeat. “I’d climb a mountain naked for her if I had to.”
LEON, an electrician, and Lizelle were in seventh heaven when they found out they were expecting their second child in 2012. They had no inkling of what lay ahead as none of the prenatal tests showed anything abnormal.
The family were living in Bloemhof in North West then. They had no medical aid at that stage, so all the screenings were done at the nearest state hospital, in Welkom.
When Lari-Chel was born she weighed just over 2kg. “The gynaecologist said, ‘Wow, she’s little’,” Lizelle recalls.
Soon after the birth doctors discovered the baby wasn’t able to swallow and diagnosed her with an amniotic fluid infection.
“The milk simply ran out of her nose,” Lizelle says.
“She was fed via a tube but still lost a great deal of weight. Three days after she was born she weighed just 1,6kg and was transferred to Universitas Hospital in Bloemfontein, where it was confirmed her oesophagus hadn’t developed.”
Doctors also discovered the hole in her heart, and she had an operation at just six days old to repair it.
Before the operation the surgeon advised Leon and Lizelle to say their goodbyes as there was a good chance the tiny baby wouldn’t make it.
The doctor’s exact words to them were, “I’m working with a heart that’s roughly the size of my thumbnail,” Lizelle recalls.
The three-hour operation was a success – but 15 days later Lari-Chel went into cardiac arrest three times after a gastroscopic feeding tube was inserted. Again, doctors warned her parents to prepare for the worst.
“Altogether we’ve probably said goodbye to her about eight times,” Leon says.
“It used to make me so angry,” Lizelle says. “Every time it happened I’d tell the doctors, ‘Who do you think you are, telling us we need to say our goodbyes? Do you think you’re God?’ ”
She also used to get upset when people tried to console them by telling them everything would be okay.
“It’s actually the worst thing someone can say. I’d tell them, ‘Do I look okay to you?’ ”
GRADUALLY their sickly baby developed into a fragile toddler who received all her nutrients through her feeding tube.
Lizelle and Leon lived in hope that some day she’d eat normally and run around like other kids. They were told an operation to create an oesophagus was her best hope but the surgery was postponed repeatedly as Lari-Chel wasn’t strong enough.
Finally their GP referred them to Beale, who performed the procedure at Mediclinic Morningside in Johannesburg in October last year.
It was expensive – the operation cost nearly R1 million, which was covered largely by medical aid. A further R60 000 was raised by family and friends.
Lari-Chel knew exactly what was happening, Lizelle says.
“Before she went into theatre I asked her, ‘ What is the doctor going to do?’ And she said, ‘He’s going to cut me so that I can eat with my mouth’.”
Three weeks later Lari-Chel was able to taste food for the first time – first that precious ice cream and then, by the time her birthday rolled round in February, she was able to get stuck into all the treats.
Lizelle and Leon have a message to other parents who might be going through tough times with their children: “Never stop believing.”
‘I’m working with a heart that’s the size of my thumbnail,’