Kaiden Mann

I met this little guy a few months ago. He won my heart . . .

He was a little wiggle-worm all sprawled out on a pallet in front of the television set. He’d stretch this way and he’d stretch that way, finally he just reared his head back and watched TV upside down. Didn’t much matter to him. His kaki shorts barely touched his little knees and his black t-shirt sported a little drool. This just made him all the more handsome.

Ten-month old Kaiden Mann won me over with his bright eyes and his ear-to-ear grin. Kaiden’s a little ball of energy wildly taking in his world and sucking up every drop of life around him.

Little Kaiden’s not like other babies. His head is misshaped and is scarred from two cranial surgeries necessary to open his skull giving his brain room to grow. It’s also a little bumpy where a shunt has been inserted to allow the fluids to drain from his brain. He has a perfect little body except his fingers and toes are webbed. Kaiden was born with Apert Syndrome, which happens about once in every 200,000 live births.

Apert Syndrome is a disease where the seams between the skull bones close earlier than normal. This affects the shape of the head and face. Babies born with Apert Syndrome have severe webbing of the fingers and the toes, along with numerous other symptoms.

The disease is inherited. Only one parent needs to have the gene to pass it on to a child. And, in some cases, it may occur where there is no known family history.

Treatment for Apert Syndrome consists of surgeries to correct abnormal bone growth. And, Kaiden is facing as many as 15 before he reaches the age of 18.

Kaiden may be different, but he is a very special little boy. He has had two cranial surgeries

Carla Barnes, Kaiden’s mother, said the next surgery he is facing is to separate his fingers and toes.

“We’ve been told that here in Mississippi doctors will only be able to separate three of his fingers on each hand,” she said. “But, surgeons in Dallas say they can separate all five fingers and toes. We want to given Kaiden every advantage we can. That’s why we want to go to Dallas for the surgery.”

There will be two different surgeries to separate Kaiden’s fingers and toes. In the first surgery, the doctors will separate his thumb and first finger, same with the toes. Then, three months later, Kaiden will have the remaining three fingers and toes separated.

“I don’t want Kaiden to have to settle for a finger here or a toe there,” Carla said. “I want the best for him and I want to him to have every chance possible. That’s why we are trying to raise money to go to Dallas for the surgery. Insurance won’t pay for the out-of-state surgery.”

Even with the surgery, it will take a longtime for Kaiden to gain full use of his fingers. They have been in one position since conception and he doesn’t know any other means of using his little mitten hands.

Another surgery Kaiden is facing is having his mid-face reconstructed. Carla said the arch of his mouth more of a cathedral shape.

“The arch of his mouth goes straight up to a point,” she said. “The doctors will have to go in and widen his jaw bone and nasal area.”

Carla was in her seventh month of pregnancy when through an ultra-sound doctors discovered something was wrong with his skull.

“I was sent to have a MRI done,” she said. “The doctors were unable to one a hand, and the other looked like a mitten. It was then that the doctors told me the only disease where there were cranial malformation and mitten-like hands was Apert Syndrome.”

Carla said she had never heard of Apert Syndrome before then. The disease is the result of a malfunction in the gene. There’s nothing the mother or father could have done to prevent it.

Carl as said most children born with Apert Syndrome can have normal intelligence, but much of that depends on the skull. The brain needs room to grow Kaiden has a shunt that allows the fluids to drain and keep the pressure off his brain.

“Apert children tend to be behind in their milestones. He is over 10 months old and has no teeth,” she said. “He’s not crawling and he didn’t start sitting up until he was nine months.”

A physical therapist comes out and works with him. She teaches Carla what to do. and she works with him the rest of the time.

“We work towards goals,” she said. “Our goal for a longtime was to get him to crawl, but he’s going to do it in his own time. He finds his own way to do things. Kaiden is different, but he’s not really treated any differently than any other 10-month old little boy. This is normal to us.”

Carla said her child did not asked to be born this way. It wasn’t something that she or his dad did. She said she would fight for Kaiden.

“Is it wrong for me to want him to have five fingers instead of three?” she said. “He shouldn’t have to settle. He should have every opportunity to be and look as normal as possible. We will do what ever we can to make that possible for him.”

Kaiden has much older brothers and sisters. Carla said she never wanted to be tested during her pregnancy. Had she known early in her pregnancy, she said it would not have mattered. This was her child.

“ I knew I was going to have a baby either way,” Carla said. “I am grateful we found out during my pregnancy that something was wrong. Had I not known, I would have been in total shock. Knowing before he was born gave me time to find out about Apert's and be prepared.”

Kaiden is pretty independent. If he doesn’t get his bottle when he’s hungry, he lets you know. If his sister doesn’t let him play with her cell phone with all its bells and whistles, he lets her know. Kaiden’s has a tough road ahead, but he has a wonderful support system.