Our Story - Part 1

Some people that know me, have come to know me as Aidan's mom. The cheerful, hands-on, perpetually-late-to-appointments, multi-tasking mom to the quiet boy in a wheelchair. What most people don't know, is how and what happened to Aidan. Though a little painful to recount, I feel it's worthwhile to share here because I think something can be learned from our experience. It may enlighten and help you understand who we are as people and why we are the way we are.

Resilience. Perseverance. Joyfulness. HOPE.

It was one week in March 2003 that changed my life forever. That remarkable week in March, I took home my beautiful "Baby Boy Leung," who we decided to name, Aidan. Admittedly, he was named after Carrie Bradshaw's nice, sweet boyfriend, "Aidan" from Sex & The City. After a smooth, uneventful pregnancy, Aidan decided to come into this world 3 weeks before his due date. My water broke, actually it was a slow leak...and after about 15 hours of slow-going contractions and labor, Aidan was born. He was 5 lbs 12 oz and had Apgar scores of 9,9. It was a normal vaginal delivery...nothing complicated or remarkable. The pediatrician examined Aidan and noted that he had two bruises on the sides of his head (bilateral cepholahematomas) from coming through the birth canal, a relatively common occurrence. He said they should not be anything to worry about as they should resolve on their own. Doctor said that Aidan looked good and was in good health. He told us to bring Aidan back for a follow-up with him in his clinic in a week's time. We were relieved, happy and excited! We took Aidan home and cautiously worked our way through as nervous, first-time parents.

When Aidan was about 4 days old, I noticed his skintone was a little yellow and I called the pediatrician's office to report it. The pediatricians's office informed me that it was a very typical occurrence, especially at 4 days old, and they advised me to undress him and put him by the sunlight and that the sunlight would help get rid of the yellowness from the baby's skintone. They did not seem too concerned about it so we tried to do as they advised and did not worry about it too much. About a day and a half later, baby Aidan was appearing lethargic, did not want to wake for feedings, and just didn't seem right. I called the pediatrician's office again. It was a very early Saturday morning so I had to page the doctor and the doctor-on-call, not our pediatrician, called me back. I told him that I had noticed the yellowness about Day 4 and I explained to him how Aidan was now not wanting to wake for feedings and seemed very sleepy and tired... then that doctor told us very matter-of-factly...."Take him to the ER." Kevin and I grabbed the diaper bag, hopped in the car and headed to the ER. As we sat in the ER waiting, Aidan was sleeping, undisturbed in his carseat. A million things ran through my head then about what was going on and a huge cloud of worry was coming over me. Finally, when a doctor got to us, I ran down with him everything that had led us to that point. They examined, poked and prodded him. It was difficult to watch as the medical personnel tried to stick a needle and put an IV in such a small little baby. Based on his appearance and what we had reported, they pricked his heel and did a blood test for jaundice to check his bilirubin level. They informed us that his bilirubin level was 41.5, an extreme and dangerously high level. Normally, a bilirubin level of 20 is cause for concern and immediate treatment, but Aidan's tests revealed a level of 41.5! They said they wanted to immediately admit Aidan to the NICU (Neonatal Intensive Care Unit) where they could do more tests and decide the course of treatment. Kevin and I were completely floored. We were terrified, horrified and in complete shock. Suddenly, our blissful few days with our newborn baby came to a screeching halt.

Hours later, when we got up to the NICU, the doctors told us that his bilirubin level was dangerously high and that they would need to bring it down fast. They already had Aidan in an isolette with a bili blanket and under bili lights. However, that was not going to be enough. They said they wanted to bring the bilirubin level down as fast as possible because the bilirubin could permeate the blood brain barrier and cause brain damage. What?!! Really? Jaundice could cause brain damage??!! I had always heard that jaundice wasn't anything to worry about and that it usually goes away on its own?? We read all the parenting books. We took all the parenting classes offered by the hospital...Parenting 101, Breastfeeding, CPR, Lamaze, etc. I had no idea?! Doctors said they wanted to do a blood exchange transfusion, whereby they would take out all of Aidan's blood and give him all new blood. This would be the fastest and most effective way of clearing out the bilirubin. Doctors also said that, while Aidan and I were the same blood type, they couldn't use my blood as it would take too long to get, screen and clear to use. They would have to use blood bank blood. Kevin and I became numb with worry. We consented for treatment and allowed them to help save our boy's life. It had come to that critical point. We were in a daze.

Aidan spent 14 days in the NICU. While in the NICU, Aidan was treated and medicated for a variety of possible illnesses and possible infections and had a battery of tests done...newborn hearing test, MRI, CT-Scan, etc. Though because he was a newborn, it would be difficult to tell from the tests if he had sustained any permanent damage. Only time would tell, as he grows and develops. He was initially fed by a nasal tube straight into the stomach, until he got stronger. Luckily, Aidan was a good drinker. The doctor was impressed that his ability to suck and drink milk from a bottle was very good. When they were getting ready to release him, the NICU doctor said that he would refer our case to the Regional Center and they would follow-up with us. At that time, I didn't know what that meant. All I knew was that I was just glad to be taking home my baby Aidan.