Many expectant parents spend the last couple months of pregnancy preparing for the arrival of their little one. The perfect shade of baby blue or soft pink. A rocking chair, stuffed animals, the right theme and crib. These are the fun decisions to make before welcoming home baby. But the nursery is not complete until there is a little bundle of joy to sleep in the happy abode.

Grace LeRoy and her husband of nine years, Michael, didn't get the chance to bring their son home to his nursery--at least not before several months had passed.

On December 18, 2002, the LeRoys welcomed the arrival of their third son, Colin, and their whole world changed in ways they never expected nor planned.

Like all parents, the LeRoys were eager to bring their baby home, but doctors were concerned about Colin's health, and following a seizure, he was immediately transported to Children's Hospital of Orange County (CHOC). There, just one day after his birth, he underwent heart surgery, and made himself, along with his parents, at home in the CHOC Neonatal Intensive Care Unit (NICU), where he stayed for four months.

"The day after Colin was born, he had a seizure in the NICU. He was in this fragile state, his blood sugars were off, and he was bleeding in the brain," says Grace. "Doctors observed Colin and collected research which led to abnormality documentation."

CHOC specialists discovered that Colin had Ring Chromosome 21, a rare type of chromosome disorder that creates a loss of genetic information from the 21 chromosome breakage. The disorder may be evident with mental retardation, abnormalities in the face, eyes and internal organs, or in some cases, there may be no symptoms.

Colin remained at CHOC under the care of several specialists.

"CHOC's NICU was literally our home away from home for so long that we made friends with all of the nurses and doctors," explains Grace, a realtor. Her husband often stayed at the couple's Aliso Viejo home with sons Cole, 7, and Austin, 3. It was a difficult time for the devoted parents, who were torn between their desire to be with their new baby and their commitment to their other sons.

In February 2003, Colin underwent angioplasty, a procedure that creates a larger blood flow through the heart. Doctors monitored his blood pressure and heart pulse while he recovered from the procedure.

After reaching a stable condition and securing his blood levels, Colin left CHOC in April 2003 to finally come home to his family. His stay at home, however, was short-lived. Colin returned to CHOC in August for a three-week stay due to G-tube (gastrostomy tube) problems. (A G-tube is placed in the stomach for feedings/nutrients.) In the spring of 2004, he returned after suffering from Apnea spells. (Apnea is a disorder that affects the way a person sleeps, often disrupting sleep patterns and breathing.) In July 2004, Colin underwent a third G-tube surgery.

The LeRoys know there is a long road ahead of them, but are confident, thanks in large part to the experts at CHOC, that they have the skills and resources required to face the challenges ahead.

Grace's positive experience with the hospital and the special friendships she developed with staff members, like Marta Gebo and Karen Stroud in the hospital's NICU, motivated her to be a part of the CHOC Patient Advisory Council, created to help provide the hospital with feedback from patients and their families.

"We have had a great experience at CHOC, and want to pass that along to others" exclaims Grace. "It has definitely been a learning experience for the entire family, but we are so grateful to have had the support of so many people at CHOC. Colin has been and continues to be such a 'little fighter' and gives us so much hope and strength. We will always be grateful to all of the NICU nurses and doctors who nurtured and loved him during his difficult time. Thanks for helping us bring our baby home!"

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