Smiling through adversity

Joshua Spencer-Derman is only 18 months old, but is already a real little boy’s boy. With his inborn
spirit for adventure, he’s tough, courageous, determined and keen to try anything. But his first year of life was filled with doctors, hospital visits, operations and recovery time – it was an uphill battle which brought the bravery out of Josh, according to his mom, Nadine.

Joshua was born with a cleft lip and a palate, which Nadine thinks ultimately made him strong enough to face any future adversity.

Jolt to a start

Nadine and her husabnd, Wayne, were at Nadine’s routine 23-week scan when they heard the news. They started getting nervous when their doctor left the room without comment, and their fears were realised when the doctor eventually returned and confirmed that their unborn baby had a cleft lip and possibly a cleft palate.

There was also a chance that Joshua would be born with other facial features not having developed properly. Soon after the scan, Nadine had to undergo an amniocentesis to test whether or not Josh had any other foetal abnormalities.

“My greatest fear was that he was going to be blind or deaf as well,” says Nadine. But the couple was soon reassured that Josh would be born with no other genetic complications.

A baby is born

Three months later, Joshua Theo Spencer-Derman was born, with both a bilateral cleft lip and palate. His lips were partially split on the one side and completely split on the other, creating a cleft that led all the way to his nose.

When he cried, Joshua revealed a large hole in the roof of his mouth, extending from the back of his
throat to the front of his gums, leading straight through to his nasal cavity. “I felt scared to look at it for the first two weeks,” Nadine admits.

She did, however, fall completely in love with her boy from the start and was absolutely smitten with
his funny little smile. “He was lucky enough to have a gorgeous, neat little cleft, and it looked like he had three little lips forming his top lip which we just loved and enjoyed kissing so very much!”

Tough to feed

Still, the malformation made feeding a big challenge for Joshua, and his parents. He couldn’t breastfeed or suck a bottle properly. The couple sought help from a feeding specialist who taught them to rhythmically squeeze the milk from a bigger teat into Josh’s mouth. He had to be kept upright during each feed to prevent the milk from flowing through his nasal cavity.

“It was very challenging and stressful,” says Nadine. “You had to get your and his position perfect. Wayne and I were so tense every time we had to feed him. It took us anything from an hour to an hour and a half.”

For six weeks Nadine and Wayne tried feeding Joshua in various positions, also changing the pressure and timing of each squeeze to see which would work the best. But with each squirt of milk Josh took in a lot of air and suffered from severe reflux.

His inability to feed properly also meant that he wasn’t putting on enough weight to undergo corrective surgery for his cleft lip and palate.

Just not getting bigger

At Joshua’s six-week check-up the paediatrician advised the couple to add rice cereal to Josh’s diet, as well as a protein powder for infants. They were also told to add a charcoal remedy to his bottle, which would help to absorb the air he swallowed during feeding.

Still, Joshua remained underweight, staying just below the tenth percentile for his age. Nadine and
Wayne were becoming desperate. Wayne took to the Internet out of frustration during another late
night battle to feed his baby. He then with a teat that made it easier to suckle and a valve that would prevent air from going back into baby’s mouth.

Once the couple got hold of the specialised bottles (manufactured in the US), they could finally relax and enjoy feeding their baby. “It was like a miracle,” says Nadine. “It took a few days to master it, but this just made the greatest impact in his feeding.”

Joshua soon started gaining weight and at four months he was ready for his first corrective surgery.

The first surgery

It took one and a half hours to repair Joshua’s cleft lip and just one week for him to recover. “The result was incredible,” says Nadine. “He came out with a normal top lip with stitches on the two sides. His smile obviously looked very different and, in a way, we missed his gorgeous three little top lips. We got so used to them!” she laughs.

Joshua went home the day of the operation and was already showing off his new smile by the
end of the day. Joshua would undergo a second surgery six months later to repair his cleft palate. Until then, however, he would learn to eat without a solid palate. Nadine recalls the first time she started him on rice cereals when Josh was five months old.

“I was not sure what was going to happen, but he ate it and loved it. He sneezed a few times,” she adds, “and the cereal came out of his nose. But he didn’t know any differently and he was fine!”

When it was time for more textured solids, Nadine was apprehensive again. She had to choose very particular finger foods to prevent anything from getting stuck in Josh’s cleft. “A small piece of toast once got stuck in there,” she recalls, “and he started gagging. But it was all fine. He choked a bit, and it came out.”

The final say

Soon, however, Joshua underwent his final surgery to repair his palate. Naturally, Wayne and Nadine were relieved. Never again would they have to worry about food getting stuck in little Josh’s cleft.

He was free to eat and play like a normal toddler and was soon able to suck from a straw. Without surgery, Joshua would not have been able to eat or breathe properly, nor would he have been able to say his first word. But within a few months, Josh was able to say “Da-Da”, which meant that his tongue was pushing against his palate properly and the operation was a happy success.

In the future Joshua might need speech therapy, and will probably have to have his gums and teeth orthodontically corrected at a later stage. But as he proved time and again so far in his young life,
there is very little that this brave one-year old cannot handle.