Infant Battles the Odds Against His Survival to Get on Road to Recovery

When 10-month-old Alvar Lopez was brought to Childrens Hospital of Orange County last August there was little hope he would live. Born with a rare genetic syndrome that affects many organs in the body, he was soon placed on the very critically ill list .

Now, after a series of operations, including three heart surgeries, there is hope for Alvar. On Thursday, his parents and about 35 doctors, nurses and social workers showered him with gifts to mark the day he left the pediatric intensive care unit where he has lived for the past eight months.

“The battles he fought to live and the battles we fought for him to live, make him special,” said Nancy Kraus, Alvar’s primary nurse at CHOC.

“He’s now ready to use his energy to grow rather than fight being sick,” Kraus said.

Covered by Insurance

Alvar’s parents, Alicia, 19, a seamstress, and Salome, 24, a waiter, have visited their son each day of his stay and they say they hope that there are enough miracles left to bring their first child home as soon as possible.

“Only God knows,” Alicia Lopez said.

Alvar’s care has been covered by three insurance companies.

Alvar will now undergo developmental rehabilitation at Western Neuro Care Center in Tustin and within a year he will be back at CHOC for what doctors hope is a final “corrective” heart surgery.

Alvar suffers from a rare disease that doctors in the past five years have commonly referred to as CHARGE syndrome. Each letter stands for an organ that the disease affects. They are: colobomi, an eye disorder; heart disease; atresia, a nose problem; retardation; genital anomalies and ear anomalies.

This is the first such case ever treated at CHOC.

Dr. Nick Anas, Alvar’s physician, said the boy is primarily affected by a heart disease that causes him to turn blue, and lung disease. He is also retarded, partially deaf and has an eye disorder and genital anomalies, his physician, Anas said.

Numerous Surgeries

Besides his three heart operations, Alvar also has undergone a tracheotomy or an opening of the windpipe to allow breathing, and a surgical incision in his stomach for feeding, Anas said.

“We hope to have successful neurological rehabilitation and have him come off the ventilation system once he is stable enough and then have final corrective heart surgery,” Anas said.

Anas said the intensive care unit at CHOC normally handles acute health cases and Alvar has far exceeded the average three- to 14-day stay.

Salome Lopez, who lives with his wife in Santa Ana, said that Alvar was born at UCI Medical Center last June and that after he was on the very critically ill list for two months, doctors there were ready to give up on him because they didn’t have the necessary facilities to keep him alive.

“I had some hope when they told us this hospital was good. We had faith,” Salome Lopez said.