ANDERSON, Ind. — Connor Gooding’s bright eyes and big smile as he runs across the room and jumps into his mom’s lap are misleading. The tiny boy, grunting with happiness, looks like any ordinary, healthy 2-year-old.

Stephanie Storm-Gooding squeezes the little boy tightly, kissing him on the forehead.

“I love you,” she says so fervently you know she means it with every fiber in her being. She ruffles his spiked blond hair as Connor scurries off to find the green ball she asked him about.

As he toddles around, the grunting and clapping increasing, Stephanie explains there isn’t anything ordinary about 5-year-old Connor. His slight stature and inability to talk mask his true age.

Everything seemed fine at birth. He screamed and cried loudly just like her first son, Camden, now 7. But at just 2 months old, the idea that everything, let alone anything, was “just fine” was shattered.

Connor became jaundiced and was diagnosed with Alpha 1 Anti-trypsin Deficiency, a rare hereditary genetic disorder that can lead to the development of lung and liver disease. Tobey and Stephanie Gooding were scared but ready to face the challenge head on, thinking this would be the toughest part.

But it was only the beginning.



No choice but to transplant

When Connor was 4 1/2 months old, Stephanie sensed something was wrong. She called the doctor’s office, telling them of her mother’s intuition. They told her to bring him in the next day.

They didn’t make it.

At 6 a.m. that morning, the couple found their son unresponsive, and he was rushed to Riley Hospital for Children in Indianapolis. All of his systems were shutting down, and he was in septic shock. But after two weeks in pediatric intensive care, all of his organs — except the liver — had recovered. The doctors were shocked he’d rebounded at all, especially to that degree, Stephanie said.

But the liver hadn’t. It was in such a terrible state doctors said Connor would need a transplant within 12 to 24 hours. The other option for the Goodings was to “just keep Connor comfortable.”

“There wasn’t even a choice for me,” Stephanie said. “He was listed at 11:35 p.m., and by 2 a.m. they told us they had a liver.”

The liver was from a 5-month-old in Michigan. Transplant from a child at that time in that state was illegal, but the governor stepped in, changing the law that day and allowing Connor to receive the new liver. The surgery was risky, with Connor only having a 25 percent chance of waking back up from surgery, Stephanie said.

After surgery, doctors thought things went well. Soon, though, they disclosed Connor had yet another rare disease — Biliary Atresia. The disease causes the bile ducts to become inflamed and blocked. He had to go back to surgery several times after the transplant.

“They told us, ‘We can’t get him off the table. We need another liver but it isn’t available. This is it. There is nothing else we can do,’” Stephanie said. “But I told my husband, ‘The clot is gone. I don’t know how, but the clot is gone.’”

Her mother’s intuition again panned out as the next day doctors declared a medical miracle — the clot was gone. They had told the Goodings there was no explanation for it. His liver went from 95 percent necrotic (dead cells) to 5 percent necrotic by Monday.



Rising medical costs

The trauma of surgery put tiny Connor back into kidney failure, so he was on dialysis 24 hours a day, seven days a week, until he “finally peed.”

“I’m not sure anyone has ever been so excited about a bodily function as we were that day,” Stephanie said, laughing.

He remained on the ventilator fighting infection after infection for four months. But at 8 1/2 months old, Connor was finally healthy enough to go back home.

At his most critical point, there were 27 separate tubes, needles or monitors connected to Connor’s body. When he went home, he still had three things hooked up and 16 medications.

Today, the active toddler has no tubes left and only two medicines that he takes on a regular basis. He goes to speech and occupational therapy two times a week and goes to a special school to work on his speech — Talking Time Learning Center in Noblesville.

Stephanie said although they have health insurance the medical bills still add up, with medical expenses each month more than their house and car payments combined. Connor, while relatively healthy, requires therapies to catch him up developmentally and will always be at a higher risk for other disease. This susceptibility requires that he get a five-hour infusion each month at Riley costing $4,500 each time.



‘We have a new normal’

The family is hoping that proceeds from a fundraising dinner and silent auction on Saturday will help offset some of the growing costs. The proceeds will go toward the Gooding Health Fund established at Madison County Federal Credit Union.

“At first this whole situation was so surreal,” Stephanie said of Connor’s medical situation. “I felt like I was trapped in a television drama. But then after it went on for so long, that was just the way it was. I tried to learn anything and everything I could about what Connor had and what we needed to do. And now, well now it is normal. We have a new normal.”

Dr. Jean Pappas Molleston, clinical professor of pediatrics at IU School of Medicine, Riley Hospital, helps direct Connor’s care. She said what the Goodings have dealt with was far from normal. Each of the diseases Connor was born with are extremely uncommon — one affects 1 in 8,000 live births and the other 1 in 20,000. He had both.

“He was super sick when he was transplanted and had a really stormy course after transplant,” Molleston said. “But he has done great. He has a remarkably energetic and proactive mom who has carried him such a long way. It really does seem like a miracle!”



Need for care continues

Molleston and Stephanie remain close, seeing each other often for medical visits and exchanging e-mails, Stephanie’s always with a picture of Connor attached.

“She sends wonderful pictures of him, or I see him climbing around when he comes here and I remember how sick he was for such a long time,” Molleston said. “He had so many organ systems shut down and, now, it is so different. It just seems like a miracle. But the transplant is not a cure. He was given a new set of conditions that are better than what he was born with. He requires daily medication, monthly monitoring and monthly doctors visits. And he undergoes therapies as well.”

Connor doesn’t seem to notice that he’s making medical waves, paving the way for treatment for other children who may be born with these two diseases.

When his mom pops the DVD featuring his medical journey into the player he claps when his smiling face graces the screen.

“He’s just the happiest child,” Stephanie said, beaming herself. “He’s gotten through so much — 12 times they told us he wouldn’t make it, and now, look at him. He’s made leaps beyond where they thought he could be, and we want to keep that going.”



Contact Abbey Doyle, 640-4805, abbey.doyle@heraldbulletin.com.