Parents deal with infant's ailment

The child will likely have surgery in about a year.
By JOHN W. GOODWIN JR.
VINDICATOR TRUMBULL STAFF
GIRARD -- City residents Pam and Lewis Skruck know all too well how a struggle can strengthen family bonds.
Like most any other couple with a 3-year-old child and a 31/2-month-old infant, the Skrucks' days are hectic. This family, however, deals with a more pressing issue -- one that takes precedent over everything else in a normal daily routine.
The newest member of the Skruck family, Wesley, born little more than three months ago, came into the world with a condition called omphalocele, in which five organs are located outside his body.
The young boy's large and small intestine, spleen, stomach and liver are all on the outside of his body.
"They are actually outside his body, but inside a protective sac," said Pam Skruck. "We found out through a detailed sonogram. They could actually see a protrusion and diagnosed it then."
According to the omphalocele Web site, the condition, to some extent, occurs in one in every 5,000 births.
Being diagnosed very early in the pregnancy, the Skrucks had to make a decision to continue or terminate the pregnancy. Pam Skruck said not having the baby was simply not an option.
"Even though I was only 141/2 weeks, I was already attached," she said.
Educated themselves
Pam Skruck spent the remainder of her pregnancy learning more about the ailment her soon-to-be born son would have. She contacted, via the Internet, other families who had gone through the same thing. By the time the Wesley came into the world at little more than 3 pounds, Pam Skruck said she and her husband were as mentally prepared as possible to undertake the challenges ahead.
After his birth in Youngstown, Wesley was immediately taken to the Cleveland Clinic where he remained the first three months of his life. Pam Skruck said her life during those three months consisted of daily trips to the Cleveland Clinic accompanied by the daily challenges of meeting the needs of a busy 3-year-old boy.
Lewis Skruck works in heating and cooling. Pam Skruck took eight weeks' leave from her job in accounts payable for a development company. She said an understanding boss allows her to work from home so that she can make the necessary trips to the hospital and tend to Wesley's needs.
About two weeks ago Wesley was permitted to return home from the Cleveland Clinic. In a second-floor nursery in the Skruck home the usual crib and baby accessories can be found, but in this nursery there is also a constant monitor, feeding tube lines and an oxygen machine.
Still, with all the machines and constant checking by mom, Wesley seems happy. He cries but is quieted when placed in his mother's arms. He demonstrates none of the concern evident in his parents about his condition.
Surgery in future
Now, the family waits. They are waiting for Wesley to grow a little more and gain enough weight to handle the surgery required to place his organs back inside his body. Doctors said it could take as long as one year before the baby is ready for that move.
"With his size and weight, there was no way they were going to put five organs back into his little body," said Pam Skruck. "They want him to grow, get healthy and make sure his lungs can withstand the surgery."
After the surgery -- or combination of surgeries depending on what doctors decide is best -- Pam Skruck said she has one major wish for her infant son -- happiness.
"I just want him to be normal. I just want him to be a happy child that can do what he wants to do," she said. "They are optimistic that he will be fine after the surgery."
Cost concerns
The Skrucks know all the hospital visits and surgeries are going to be expensive. Pam Skruck said the family has medical coverage, but she is concerned that some of the bills may exceed that coverage.
"We keep saying he is going to be a million-dollar baby when we are done. I can't imagine what these bills are going to be," she said. "Any money you had saved, it is long gone."
Still, Pam Skruck says Wesley's good health will be well worth every penny. Knowing that Wesley's condition is often accompanied by other problems, Pam Skruck said she feels fortunate that her son has the level of health he has.
"I am definitely blessed that he doesn't have anything else wrong except his omphalocele," she said.
jgoodwin@vindy.com