Baby Ryan’s 2, Still Fighting Mom Thrilled ‘He’s Made It This Far’ - With 7 Medications, No Solid Food
His favorite book is “The Little Engine That Could,” split in two now by his constant flipping and tugging.
It might just be his story. Ryan Nguyen was born premature and sick, suffering from kidney and bowel problems and possible brain damage.
His Spokane doctors predicted he would die. Sacred Heart Medical Center tried to discontinue kidney dialysis and said any medical treatment “was futile.”
Baby Ryan is now a toddler, weighing almost 35 pounds. He sits up, crawls and pulls any hair within reach. Ryan turned 2 years old Sunday. He celebrated the day before with family members and a Winnie the Pooh cake he could not eat.
Still, parents Darla and Nghia “Jack” Nguyen were thrilled.
“We were so pleased he’s made it this far,” Darla Nguyen said. “We try to think of the positive things and not so much the negative things.”
Ryan’s story touched off a debate on medical ethics. It attracted national attention after a Portland hospital offered to try to save the baby.
The Nguyens moved Ryan and their 3-year-old son, Austin, to Vancouver, Wash., to be close to the infant’s doctors.
Ryan still is watched 24 hours a day by nurses and his parents. He’s given at least seven medications to help prevent seizures and treat intestinal problems. He’s fed through IVs in his arm and his stomach.
Ryan still suffers from neurological problems, kidney disease, bowel troubles and liver disease. But his kidneys still are working, his seizure disorder is mild and his developmental problems are moderate. Doctors are mainly concerned that he can’t eat.
“What is his big problem at this point, in two years of life, is that he’s unable to eat solid food,” said Claudia Brown, spokeswoman for the Legacy Emanuel Children’s Hospital in Portland. “Obviously it’s not an ideal situation.”
Doctors say it’s unclear if Ryan’s intestines will ever function enough to support him without intravenous nutrition.
Doctors and family members hope that Ryan will be weaned off the IV within two to three years. Although he could continue relying on IV nutrition indefinitely, it’s loaded with side effects, like life-threatening infections and liver damage.
Ryan’s already suffering from cirrhosis of the liver, and his IV nutrition probably played a role.
If Ryan does need a kidney transplant - and he probably will - Jack Nguyen will give up one of his.
“He’s my son,” Jack Nguyen said. “We have it all planned.”
Ryan’s first word was “Papa.” He also says “Mama.” Mostly, he babbles.
His crib is in the living room. Ryan likes to watch cartoons such as “The Lion King.” His favorite movie is “Free Willy 2.” He likes listening to music, like The Carpenters and anything from the ‘80s. Ryan, a technological baby, is starting to like techno music, his mother said.
For his birthday, Ryan was given a haircut, a blow-up ball, clothes, books, Tigger slippers and a musical push-button toy.
On Monday, the family left the apartment to celebrate Ryan’s birthday. Darla and Jack Nguyen bundled up Ryan in his wheelchair and pushed him through a Portland mall. They let him watch cartoons in TV stores, and they got a professional picture taken.
“When I look at him, I let everything else go,” Jack Nguyen said. “I tell you what - it’s worth every single minute of it. If I had to go through it again, I’d do it.”
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