Who is Aloshua?

Aloshua at a visit to his pulmonologist in 2011.

On May 18, 2005, Aloshua's mom was air-flighted to Little Rock, Arkansas. She was 27 weeks pregnant and in labor. A few short hours later, Aloshua (Losh) was born over three and a half months early. His family had been through a premature birth before and thought they were prepared for the battle to come, but the simple truth is that you just can't prepare for a special child like Aloshua.

Aloshua's first hours of life were so critical that it was nearly twelve hours later before anyone on his neonatal team noticed the open hole in his back. When his family arrived in the neonatal intensive care unit to visit Aloshua the morning after his birth, they learned that he had spina bifida, needed an oscillator to keep him breathing, and would need to be transferred to Arkansas Children's Hospital for surgery as soon as he was stable enough to come off of the oscillator.

By the time he was two days old, they'd learned that he had an Arnold Chiari Malformation (ACM), severe lung problems, an unspecified genetic defect, and a hole in his heart. He was transferred to Arkansas Children's shortly after, and at only four days old, he had his first surgery to repair the open hole in his back from spina bifida.

Within days of his first surgery, the fluid build up in his lungs was reaching critical levels. His head was growing so large from hydrocephalus that doctors were desperate to get him into surgery to place a shunt. They started an entirely new round of drugs to address the fluid build-up, and he underwent his second surgery (to place the shunt) before he was a month old.

Three months later, Aloshua was allowed to go home for the first time since he was born. By November, however, his family and medical team began to grow concerned over his weight. He ate three times what a baby twice his age ate, and continued to lose weight rapidly. He was hospitalized again, and the family received more bad news.

Aloshua prior to the feeding tube and LADD procedure.

 Aloshua's intestines and appendix were on the wrong side of his body. He had hernias and a hole in his diaphragm. He needed another surgery to repair the hernias and shift his intestines and remove his appendix. So, he had another surgery.

And then another. And another. And another.

A few short months later, Aloshua became seriously ill and was rushed back to the hospital. Somehow, MRSA had gotten into his shunt and caused a serious staph infection in his ventricles. He was rushed into surgery to remove the shunt and place a temporary drain tube. Over the next weeks, he dropped back down to eight pounds while his medical team worked to rid him of the infection so the shunt could be replaced.

While in recovery from the shunt replacement, he coded again. He spent days in a medically induced coma in intensive care, fighting off pneumonia that seemed to have developed overnight. He was so swollen during those days that he didn't even look like the same baby who'd been so tiny just days before.

Aloshua in PICU.

 Despite the setbacks, he pulled through it as he always did and got to go home again.

But he'd stopped growing once again.

At a year old, it was evident that his medical team could risk waiting for him to grow no longer. He weighed only twelve pounds and was eating 24 hours a day, 7 days a week via G-Tube. He could not lift his head, sit up or hold his own pacifier. He had these huge, serious eyes and this tiny little body. He'd already had a shunt, two revisions, a G-Tube, was on oxygen 24/7, and was in and out of the hospital for lung problems weekly, but it was far from over for him.

He was fitted with a trach shortly after his first birthday and coded once again. A blood clot had developed in his trachea from surgery and cut off his oxygen supply. Another emergency surgery later, he was once again stabilized, but there was more bad news to come. The doctors were no longer confident that he could handle breathing on his own. He would need to be on a ventilator 24/7, possibly for years.

For five months, his mom (Courtney) and brother (Kaia) lived at the hospital, waiting for Losh to grow big enough to go home once more. During those months, entire lives reordered. His brother was taken out of daycare because the infection risk to Aloshua was too great. His family temporarily relocated from their hometown to an apartment near the hospital in Little Rock with Aloshua's aunt and uncle. What had once been his nursery was transformed into an at-home intensive care unit.

When he finally got to go home again, he came with more medical equipment than anyone knew what to do with: A ventilator. 2 suction machines. Oxygen. An IPV machine. A feeding machine. A pulse-oximeter. Trachs. A stander. A walker. Leg braces. A brown paper grocery bag of medication. Boxes of urine catheters, of suction catheters, of trach ties, special soaps, drain sponges, expensive formulas and blenderized foods, feeding bags, syringes...

Ventilator, Pulse-Oximeter & Oxygen

It was never a hardship for his mom though, and, with the help of family and friends, she's managing to give Aloshua the normal childhood he so desperately deserves.

Playing video games at home

"Skating" with his family at Thrills on Wheels in Searcy

His journey is far from over though.

In 2010, Aloshua underwent a second surgery on his spine to repair his spinal cord and remove part of his spinal column. Later that year, Aloshua's stomach and intestines pushed through the hole in his diaphragm and were lodged in his chest cavity, which clamped off both his stomach and large intestine, nearly killing him. He was once again rushed into emergency surgery and spent weeks in intensive care at Children's recuperating.  

Aloshua is six years old now and only recently learned to pull up on furniture without help and to walk with the aid of braces and a walker. He's had nineteen different surgeries, has speech, occupational and physical therapy four days a week and weighs only thirty-two pounds. Part of his diaphragm is paralyzed, his lungs are severely damaged, and his doctors are concerned about the health of his kidneys. He's been in and out of the hospital since birth, is tube fed, and requires the use of a portable ventilator twelve hours a day. His immune system is compromised, he has to wear a face mask when out in public, and is frequently hospitalized for pneumonia and RSV.

In 2010, Aloshua began to talk and is now able to string short sentences together. His medical team does not know when, or if, he will be able to live free of the ventilator and trach, and expects that he will need to undergo surgery on his bladder and kidneys to place a drain tube at some point in the near future. Aloshua is also facing numerous additional surgeries on his spine and his airways. He is developmentally delayed and colorblind, and is unable to complete many of the simple tasks a normal six-year-old might.  

Just a few short years ago, it was unheard of for a child like Aloshua to survive infancy. Thanks to medical advances and the dedication of his family and medical team, however, Aloshua has not only beat those odds, but he's living as normal a life as is possible.

He lives at home with his mother, grandmother and siblings, and is able to participate in modified versions of many of the same activities other six year old children enjoy. He is one of the happiest, most intelligent children you will ever meet. He has a ready smile, an easy laugh, a big heart, and greets each day with the spirit of a champion. When he pushes himself through the store in his little wheelchair, everyone he comes across stops to speak with him and leaves with a smile on their faces.

As his siblings will you tell, Aloshua isn't different, he's special.Those who know him cannot help but agree: Aloshua truly is a very special child.