Coping with complications Baby

has Noonan

Syndrome

By FRITZ BUSCH

Journal Staff Writer

NEW ULM -- Shelly Winter reaches deep within herself and finds her sense of humor when she recalls what Children's Hospital employees told her after she and her son Austin finally went home after he was born.

"They told me I know so much about medicine, I could work there with them," Winter said with a smile on Wednesday.

Nine-month-old Austin was born seven weeks early, on July 14, 2003, with Noonan Syndrome, a rare birth defect, at Abbott Northwestern Hospital in Minneapolis.

Winter was hospitalized 20 days prior to birth in order to increase Austin's survival chances. She was given shots to deter labor.

"I was a pin cushion getting up to six shots a day in order to stop contractions," Winter said.

She tried to think about things other than the birth. She disliked daytime television, so she tried reading and doing crossword puzzles.

Austin was born via emergency C-section at 1:56 a.m. His head was swollen, and his eyes were closed due to amniotic fluid that doubled his weight. He weighed 3 pounds after it was drained.

His father Dan made it to the hospital for his son's arrival.

Austin was on a ventilator for nearly two months before Shelly and Dan could hold him.

He has been hospitalized three times since his birth. He uses a feeding tube 20 hours a day.

Because Noonan Syndrome has affected the lives of the Winter family, Shelly spends much of her spare time researching the condition.

Austin's progress is measured in small increments. Positive signs are that he is beginning to use his hands more. On Wednesday, he ate some baby food with peas for the first time and seemed to enjoy it.

Austin must stay indoors most of the time, in order to avoid infection.

"Life threw us a curve ball, but he's a fighter," Shelly said. She and Dan have two daughters, Chantel, 6; and Breana, 3.

About 80 percent of children with Noonan Syndrome have abnormalities. The list includes a narrowing of the valve that takes blood from the heart to the lungs for red blood cell oxygenation, disorganization of heart muscles and a hole between the two upper and/or lower heart chambers.

A gene for Noonan's Syndrome has been mapped in some families.

Due to the its genetic nature, a cure for the condition cannot be expected. Surgery, medicine and therapy may help deal with the condition.

Without significant cardiac abnormality, life expectancy is normal. Infection risk is often high in the middle ear, chest and throat.

The exact genetic abnormality remains unknown, but with ongoing research, it's likely that genetic features will be identified.

After the basic defect is known, a diagnostic test may be possible and therapy is a possibility.

A benefit social was recently held for the Winters at Our Savior's Lutheran Church. Thrivent Financial for Lutherans will match funds. Donations can be placed in an account for Austin Winter at Citizens Bank, New Ulm.