‘The Strongest Boy I Know’

By TRICIA NEAL, CJ Staff Writer
Commonwealth Journal

August 11, 2008 07:10 am

— “Levi is the strongest boy I know.”
Laurie Goff may sound like a typical mother, proudly describing a typical son. But 1-year-old Levi Goff is no typical boy. And his family has plenty of reasons to call him strong.
Levi was born on July 1, 2007 — four weeks before his due date, barely early enough to be considered a premature baby.
“He spent only the normal two days in the hospital, and we were sent home,” Laurie said.
For nearly two weeks, the Goff family enjoyed their tiny new addition. But when he was 13 days old, he was rushed to the local emergency room — pale, limp, cold, and in shock. Somerset doctors opted to send Levi to the University of Kentucky Medical Center in Lexington for emergency surgery.
Doctors in Lexington discovered Levi had a condition called malrotation. His intestines were not held in place properly, and they became twisted.
“His small bowel had twisted and caused a blockage or a kink called a volvulus,” Laurie explained.
“We were told that they would go in and untwist the intestine and possibly remove any tissue that had been damaged.”
The Goffs waited as their newborn underwent surgery, and, when the surgeon emerged, “the news was far worse than what we were expecting,” Laurie said.
“The surgeon told us that the intestine had twisted on the main artery that supplies blood to the intestine, and the blood had been blocked for too long. All of his small intestine was dead.”
Since nutrition is absorbed from the small intestine, the surgeon explained, Levi would only live a few days in his condition.
“The news was crushing for us,” Laurie recalled.
Doctors untwisted Levi’s intestine, leaving them attached outside his body in a clear plastic bag.
“The doctor said there was a very slim chance that possibly the blood flow could be re-established, and they would monitor them for the next 24 hours. We prayed all night for a miracle — that the blood would return.”
But the next morning showed no signs of change, and the Goffs began to prepare for the loss of their baby.
“The surgeon came around and told us what we already knew,” Laurie said.
“He gave us two options. He said we could let him go while he’s under sedation and on pain medicine. He would pass peacefully. Or we could try the route of a small bowel transplant. He said that choice would be long and hard, and odds would be against him of surviving.”
Doctors told the Goffs that Levi was too small for a transplant — and that he would be dependent on IV nutrition and would need 24-hour care as he grew big enough to be considered for a transplant. The IV would likely lead to numerous infections and hospital stays — a “necessary evil” — and eventually, liver damage or failure would probably occur, leading to the possibility that a liver transplant would also be required. Levi would also have to receive treatment in Cincinnati, several hours from the Goffs’ Pulaski County home.
In spite of the obstacles in their way, the Goffs decided to allow Levi to wait for a small bowel transplant.
“We made the only choice that we knew was right,” Laurie said.
“We accepted all the risks, but had to give our baby a chance at a life. Having only another day with him would be better than always wondering ‘what if.’”
Soon after the Goffs made their decision, operators performed a surgery to remove all of Levi’s dead intestines. By the time the procedure was over, only about three centimeters of his small intestine was left. Surgeons also removed about ten percent of his large intestine.
Next, surgeons connected Levi to his IV — and, after 16 days in the University of Kentucky Medical Center, the Goffs were sent home to care for their baby.
“We only spent about two weeks at home — just starting to get used to all the new medicines and changing IV bags — when he got really sick,” Laurie said.
“He went into septic shock with a very high fever. The doctors were right. This was only the first of many, many hospital stays.”
For the next several months, Levi would spend more time in the hospital than out of it due to infections caused from overgrowth of normal bacteria in his bowel.
By November of 2007, Levi weighed 12 pounds and was ready for evaluation in Cincinnati.
“On November 29, he was placed on the transplant waiting list for a small bowel, liver and pancreas,” Laurie said.
“We went home to play the waiting game — a game we weren’t sure we would win. The odds they gave us for a child like him was that, out of 100 kids, 50 would make it to transplant and only 25 of those would survive the first year post transplant.”
The Goffs were able to spend Thanksgiving and Christmas in Pulaski County — “at home, enjoying our life together,” Laurie said.
“New Year’s Eve was spent at UK because of a respiratory virus, and then he developed another infection later in the month. We spent two more weeks at Cincinnati fighting that infection.”
The month of February came and went without any visits to the hospital, “but I was watching my baby get yellower and yellower from the damage that was occurring to his liver,” Laurie said.
“I prayed the call would come before it was too late.”
March began with another trip to the Cincinnati hospital. Levi was vomiting blood, and the condition of his liver was getting increasingly worse. Doctors determined that the bleeding was being caused by a tube which had been running from Levi’s nose to his stomach.
While the Goffs were in Cincinnati, they received some unexpected news.
“The doctor came in the room and told us they had gotten a call and accepted organs for Levi,” Laurie said.
“Our miracle had finally happened! It was the very best day in my life.”
Within a few months after Levi’s transplant, he was on his way to a somewhat normal life — just in time for his first birthday.
“He will be on immunosuppressants for the rest of his life, but it’s a small price to pay to have a healthy baby when I thought he might not make it to three weeks old,” Laurie said.
The Goffs stayed in a Ronald McDonald House near the Cincinnati hospital for nearly three months following Levi’s transplant.
“The doctors were saying that they thought he could be home by his birthday, but he had a little setback (in June),” Laurie said.
Levi’s first birthday was spent in the hospital, but the Goff family was able to spend it together — and that’s all that mattered to them.
“His Daddy (Robin Goff) and three brothers (Brandon, Jacob, and Toby) came for a visit, and they always make his day,” Laurie said.
“We didn’t get a birthday cake because his tummy had been really upset, and I didn’t want to upset it any further with cake.”
On July 31, Levi was finally discharged from the hospital, and the Goff family was able to return home to Pulaski County. He might not have gotten a birthday party at home, but the Goffs held a big “welcome home party” shortly after his return.
“I am so happy to get him home,” Laurie said.
“We just have to keep him from getting sick so we can stay here.”
Laurie says her family’s struggle has changed her life for the better.
“I have found so many caring people that have become important in our lives,” she said.
“I would not have changed anything. Somerset has a lot of really compassionate people that live in it. I love each and every one of them dearly, and they all have special places in my heart.”
Laurie is also grateful to the family that chose to donate their baby’s organs so that Levi could live.
“They made the most unselfish choice that can ever be made,” she said.
“My Levi is alive and well today because that family thought of others when they were in a terrible situation. More people need to be educated on what good comes from organ donation.”
The Goffs maintain a Web site which offers regular updates on Levi’s progress. The Web address is: www.levishawn.com.

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