Jaxon Lee Hansen: A little boy with big struggles

“Do I sound like a snake?” Jaxon Hansen asked as he hissed a streaming “s” sound. 

“Now you try.  Heather says you have to make your teeth like this,” he instructed, using his mouth to show me the right position.  

Heather is Jaxon’s speech therapist, and Jaxon visits her at least once a week.  

At five years old, Jaxon’s favorite sport is baseball, he loves math problems and his favorite color is orange.  His wardrobe consists of basketball jerseys, jeans he’s constantly outgrowing and a leather jacket of which he’s extremely proud. Jaxon is a diehard fan of the Utah Utes and Toy Story, and his playroom is full of dinosaurs and racecars.  He won’t leave the house unless his brown hair is spiked like Daddy’s, and he’ll be the first to let you know how strong he’s gotten lately.  

At 46 inches, Jaxon is tall for his age.  Watching him shoot hoops in the backyard, chasing the rebounds every which way, one has to wonder if this kid ever runs out of energy.  

“Come shoot with me!” Jaxon called toward the house.  

It sounded a little more like “thoot” and “wif,” though.

Such sounds are a struggle to pronounce with a mouth under construction like Jaxon’s is.

Born with a unilateral cleft lip and pallet, Jaxon’s struggles are quite a bit larger than his bright character and enthusiasm let on.  

“I have a hole in my mouth that goes to my nostrils, and an extra tooth!” Jaxon explained.  “Do you see it?”

Tahni and Blake Hansen, Jaxon’s parents, first discovered their son would be born with a cleft in an early ultrasound.  

Before birth, there’s very little that can be known for sure.  Many birth deficiencies are commonly connected to babies with clefts, such as heart issues, Down’s syndrome and spina bifida.  

“You have to spend the entire pregnancy not knowing exactly how bad it’s going to be,” Tahni said.  “It’s terrifying.  You want them to have the best chance possible in life, to look normal, to have a chance like everybody else.”

During his development, the muscles in Jaxon’s mouth, nose and lip didn’t form correctly.  Instead of a roof in the top of his mouth, Jaxon had open space.  

“We did a lot of preparation before he was born, learning how to feed him and do different things,” Blake recalled. “If we hadn’t worked with those specialists, he would have been in the ICU for a long time.  The nurses thought he wasn’t eating when really they just didn’t know how to feed him.”

At three months, Jaxon had surgery to close the lip and nose tissue.  One week later, the surgery was redone because the tissue was too soft and the nose didn’t hold.  

At one year, doctors closed the pallet of Jaxon’s mouth.  Though the bone will always be missing, the soft tissue of the pallet will harden like bone.  

Currently, Jaxon is regularly treated for difficulties with hearing, speech, regular breathing and sleep apnea.

Tahni explained that, “It’s all connected in there - it’s amazing how many things have to be just right for everything to work properly.”

From the time clefts are discovered during ultra sound, parents have to meet with medical specialists and social workers to help them cope.  Once the child is born, speech therapists, surgeons and orthodontists are added to the team.  

Jaxon has multiple appointments every week to check up on his development.

“I get check-ups on my nose lots, so the doctor can look inside and make sure it’s working,” Jaxon explained.  

Because clefts entirely disrupt a person’s sinus system, they’re very prone to ear infections and hearing disabilities because fluid can’t drain correctly.  In fact, when Jaxon was born, the doctors were almost sure he was deaf.

“I sort of have to go to the ear doctor,” Jaxon said. “He checks the tubes in my ears to make me hear better and not get ear infections.  I think I probably hear way better than people that don’t have tubes.”  

According to Tahni, the biggest struggle for Jaxon at this stage is the innumerable appointments and the physical recovery after each surgery.  

“Socially, it just started to occur to him,” Tahni said. “When we started taking him to speech therapy, we had to explain it to him, but even then it’s an edited version.  We showed him baby pictures, and told him he has something called a cleft lip.” 

As he grows, Jaxon’s parents are trying to educate him on an age-appropriate level.

Just recently, some kids on the playground at the gym told Jaxon they didn’t want to play with him because “his face looks funny.”

In Jaxon's words, this was "the worst day of all days ever."

“It’s only happened a few times, and it’s really heartbreaking to see his feelings hurt,” Blake said. “But it’s reality, and it’s the nature of people to reject anything that’s different.”

In the U.S., cleft lips and pallets aren’t something many people come in contact with on any personal level.  

Foundations like Operation Smile publicize the toll clefts take on children in less developed countries, but many aren’t aware that the deficiency is one that almost 7,000 U.S. babies are born with every year. 

“People are very uneducated about it, so naturally they’re curious about what’s wrong,” Tahni said.  

As parents, Tahni and Blake’s main focus is to teach Jaxon confidence and tolerance so his personality can overcome the struggles of a cleft.  

“We can’t deny that there’s a problem,” Tahni said, “It’s going to bring him some hard times, definitely, but we try to give him as much confidence as possible so he can handle those things when they come along.”

For Jaxon, the next few years will include a series of surgeries to reconstruct his mouth and nose.  His teen years will bring various revisions, and once he’s fully grown, the doctors will operate again.  

“Hopefully the surgeries will be over after he’s grown,” Blake said.

To other parents whose children have been diagnosed with a cleft lip or pallet, Tahni’s advice is to get as educated as you can.  

“Don’t ever hesitate to get second opinions,” she said.  “Also, don’t make it bigger than it is.  It could be worse, and we’re really lucky we live somewhere it can be fixed.”

This little boy, Jaxon Lee, is my nephew, and the sunshine to so many of my days. 

 Though clefts aren't something that one comes across every day, they happen, and it's important not to be ignorant of this and the many other birth deficiencies that unexpecting parents and newborns brave.  

Tahni, my sister, recently shared a really awful memory with me that makes evident the stigmas and judgements attached to birth deficiencies, especially clefts, and it prompted me to write this piece. 

When Jaxon was only five weeks old, Tahni took him out for the first time.  She was taking a rest in the ladies' room at Nordstrom, feeding Jax out of one of his special bottles.  A woman came over to Tahni and glanced at Jaxon's face.  Expecting a classic "your baby's precious" comment, Tahni was shocked when this women's face clouded over with disgust and judgement.  She went on to tell Tahni how she couldn't believe "kids Tahni's age were drinking and getting pregnant."  She told Tahni that if she wasn't responsible enough to take care of a baby, she shouldn't have had one.  

Little did this women know that Tahni was 22, married and didn't drink. 

Doctors are constantly asking Tahni if she was drinking during Jaxon's pregnancy.  In their defense, many clefts are a result of poor health and habits while pregnant.  However, Tahni's wasn't, and I'm sure there are many other mothers whose babies have been born less than perfect regardless of their efforts to keep them healthy.  

Reality doesn't have to be a rejection of what's different.  And what's different doesn't have to come with a negative stigma.  My plea for you is to abandon whatever initial assumptions you have about children and parents who live through medical problems, especially the ones that are visual.  

Sometimes, hard things happen to good people.  So take it upon yourself to make things just a little bit easier.  

If for nothing else, karma.