Against the odds

Against the odds

Josh and Jake Cleaver are two remarkable little boys, and as far as boys go, they like to give their parents, Karen and Darrell, the runaround just as much as the next 12-year-old.

But falling off bikes or out of trees is not quite the same for these Mbombela-based twins. Firstly because the fact that either of them can ride a bike at all is an achievement beyond most of their peers, but also because they are almost completely blind, and both have cerebral palsy, albeit different strains (Josh is a spastic quadriplegic and Jake is a left hemiplegic). Both strains affect the muscles, in Jake’s case the left-hand side of his body and in Josh all four limbs.

This family have come a long way, and to say that these boys are a miracle is an understatement. While the road ahead might not be all moonlight and roses, with the extraordinary parents these youngsters have, and their resilience and tenacity, the sky is surely the limit. Josh and Jake are identical twins and share the same DNA. Her first pregnancy, Karen was concerned when she started feeling ill quite early on and suspected something wasn’t right. They consulted a doctor, who suspected twin-to-twin transfusion syndrome (TTTS), but suggested they wait two weeks and then come back for a re-evaluation.

The Cleavers had a bad feeling. They went home and decided to research TTTS and were horrified at what they found, and that to wait two weeks could be disastrous. They decided to follow their instincts and play it safe, and consulted Barbara Jeffries, a specialist in the field of in-utero development problems.

She did all the necessary tests and scans and concluded that it was indeed TTTS, and urgent action had to be taken. The Cleavers were given a number of options, most of them not options at all, either to abort both babies; cut the umbilical cord of one of them, effectively letting it die; amnio drainage; or lastly, laser surgery, an extremely expensive and risky option. “There really was only one choice open to us,” says Darrell. “Abortion wasn’t an option and neither was cutting off one of the twins. We had no choice but to opt for the surgery and hope for the best, although time was running out.”

The laser surgery is a complex and highly specialised procedure, involving the severing of the intersecting blood vessels. The procedure is extremely delicate and requires absolute precision, should the placenta be nicked by the laser, the babies could well bleed to death, as was explained to the Cleavers before the operation was performed.

“We were made well aware of the risks,” smiles Karen. “They were quietly hopeful and at the end of the day there was no other option but to forge ahead.” They travelled to Cape Town to consult a professor who had experience with TTTS babies, and after numerous tests she found that the twins’ condition was worsening. She told the couple they needed to have the operation immediately, but the doctor who performed the procedure was based in Zurich, so they had to get themselves over there as quickly as possible.

Because it was a weekend and the following Monday a banker’s holiday, there was a problem obtaining visas, and they couldn’t get there. But it was a race against time and the professor arranged for the doctor to come to the Cleavers, they just had to get to London, which they did. The specialist who performed the surgery, Kypros Nicolaides, explained to them that even if it was successful, the greatest risk was that the babies would be born prematurely due to the laser surgery. The actual cauterisation process took less than an hour. “He strolled into the room, in his expensive suit and Italian shoes, rolled up his sleeves and got started,” remembers Karen. “He was as cool as a cucumber.”

He inserted the laser into the womb and started burning the blood vessels. “It sounded like champagne corks popping, it was quite surreal,” she smiles. “And by the end of it he was drenched in fluid, his fancy shoes and clothes soaking wet, but it never fazed him at all, he smiled and said ‘that’s it, all done’.”

They had to wait for an hour, after which a sonar was done to check on the babies. Almost two hours later Josh’s amniotic sac had started filling up, and it was all systems go. It had been exactly two weeks since TTTS had first been suspected, the time frame the Cleavers had been asked to wait. If they had, it would have been too late.

Once home again, their original specialist scheduled a sonar every fortnight. Her intention was to perform a C-section at 32 weeks, but requested that the Cleavers have a backup doctor in case of an emergency, such as the suspected premature birth. The couple requested that Jean Nel Jr be their doctor back home, and he agreed. Fortunately, because Karen’s contractions started at 26 weeks, on August 4, Josh and Jake officially entered this world, into the very capable hands of the paediatricians, doctors Taljaard and Botha.

Weighing in at 800g and 890g respectively, the twins both dropped 100g within 12 hours of birth, as is normal with newborns. Being 14 weeks early meant they were tiny, and extremely vulnerable, and thus had to remain in the neonatal ICU for 14 weeks. They couldn’t be touched by their parents at all for the first two months. “They were so tiny,” Darrell says. “We couldn’t touch them until they had developed a little more, as their skin was so thin and sensitive to touch that it would result in a sensation the same as that of being burnt. And if I held them in my hand they were only slightly bigger than my palm.” They were ventilated for a month due to weak and underdeveloped lungs, and were oxygen-dependant for the first two months.

“They were tube-fed at first, in increments of 1ml,” Karen remembers. “And it was an accomplishment if it stayed down! It was increased gradually because if they picked up contaminants in the milk their stomachs had to be pumped and the whole procedure started over.

“Infection was very common as their immune systems were virtually non-existent, and with the arterial and long lines and medicines inserted, infection was a constant danger. Each day was a case of three steps forward and 10 steps back.

“And there were no guarantees to set our minds at ease. The simple truth was that they might or might not be okay tomorrow, but as long as they remained stable, there was hope.”

The twins started building up immunities after three months, and their little bodies developed enough to start fighting for themselves. Fewer medicines were administered, and the 10 steps back became 10 steps forward. Once they could drink on their own, they were bottle-fed, but sucking exhausted them to the point where they would fall asleep, and consequently never absorb enough nutrition. As soon as they could finish a bottle without falling asleep, they could finally go home. “Ironically, they came home one week before their actual due date,” Karen smiles. They weighed 1,8kg each. These two youngsters have been to the darkest end of the tunnel, and made it back.

Apart from being TTTS babies, between them they have had 13 physical surgeries and 13 laser surgeries on their eyes, and yet here they are, remarkable and incredible young men – Jake an avid bike rider and Josh a keen learner, and both with a quick wit and sharp sense of humour.

The cerebral palsy is a result of brain bleeds, and both twins had to have emergency eye surgery as their retinas were starting to lift, their near-blindness a by-product of the additional oxygen they were given in order for them to get enough oxygen to the brain. Their fitness, core stability and physical strength are largely due to their surgeries, the occupational therapy and biokinesis they have been receiving for years, and also their weekly therapies. These aspects are all part of daily life for the Cleaver family, and the significant thing is that despite everything, these little boys grew stronger, a constant reminder that life will always find a way.

Schooled at Flamboyant in White River, they are a joy and delight to all who come across them, and like any bright 12-year-olds, give their parents a little grief and have the odd quirky chirp. They love school and revel in life, and that, after all is exactly how it should be. Every day is something to be grateful for, every second chance, every kind stranger and giving friend is a blessing.

And of course there is always the importance of paying attention to that gut feeling, because as is the case with Darrell and Karen and their extraordinary boys, you never know when it will save a life… or two.

What is TTTS?

TTTS is a rare, although not unheard of, complication which occurs when the blood supply is inconsistent in monochorionic pregnancies. The chorion is the external membrane which assists in the development of the placenta, and monochorion is the sharing of a single chorion and hence a single placenta.

In most monochorionic pregnancies the blood flow passes equally from one twin to another, often referred to as flow balance, but in a TTTS situation, the blood vessels have connected abnormally resulting in unequal amounts of blood being transferred from one twin, known as the donor and in this case Josh, to the other, known as the recipient, Jake.
Ultimately this means the donor twin has a decreased blood volume and urinary output, which inhibits development and growth. This then results in a less than average level of amniotic fluid and risk of malnutrition. The recipient twin’s blood volume increases which puts abnormal strain on the foetus’ heart, eventually resulting in heart failure.


July 2018

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