A Story of Life, Loss, and Advocacy

By Jennifer Garcia

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My name is Jennifer Garcia, and my husband John and I would like you to meet our two sons, Gavin who is 5, and Cameron who is forever 9 months old. You see, Cameron passed away from complications of an identifiable and treatable disorder known as Severe Combined Immunodeficiency or SCID on March 30, 2011; the day he turned 9 months old.

Cameron was born on June 30, 2010 in Texas. He underwent state newborn screening, and was discharged from the hospital as a “normal newborn.” Little did we know that our state does not screen their newborns for SCID.

Brothers

Cameron’s older brother Gavin has been healthy all of his life. We expected nothing less from Cameron. We considered ourselves blessed to have two beautiful, healthy boys.

Months passed and Cameron thrived, met milestones, and was usually in the 90% in both height and weight. At times he even exceeded his brother at the same ages. Cameron’s only ailment was recurrent ear infections, not unlike many babies including his brother. Like Gavin, Cameron got tubes in his ears at 7 months, but he continued to have cold symptoms. Cameron would be hospitalized for pneumonia shortly after he received his tubes.

Hospitals

After a week at our local hospital being treated for pneumonia and with only minimal improvements, we were transferred to Houston, Texas which is considered to be a major medical center. Even though our pediatrician had transferred us, we were all still optimistic and thought it just a tough case of pneumonia we were dealing with. We were so confident that things would be fine, John stayed behind with Gavin while I followed Cameron. No one could have ever imagined what was in store for us once we arrived in Houston. Within 4 hours of arriving at the hospital in Houston, Cameron was intubated and put into a coma to protect his little mind from what was thought to be seizures. These seizures appeared to have begun in the ambulance during the one and a half hour ride from College Station to Houston. I felt helpless as doctors tried to figure out what was going on with Cameron, and we transferred from room to room as well as continued to be bumped up in level of care. It was after 1 AM before Cameron was admitted into the PICU and intubated. I sat alone in the waiting room in the middle of the night for hours waiting to see him and wondering: what just happened? What was going on with my baby boy? And wanting to hold him knowing that he must be terrified. Truth is, we would not get to hold Cameron in our arms again for over 4 weeks, until the last moments of his life, and he passed away.

As a family we waited anxiously by his bedside as Cameron remained in a coma and endured many tests to try and figure out what was happening to his little body: CAT scans, MRIs, EEGs, spinal taps, blood transfusions and massive doses of anti-seizures, anti-bacterials, anti-virals, and anti-fungals, just to list a few. Eight teams worked on him daily: Critical Care, Pediatrics, Neurology, Epileptology, Toxicology, Immunology and Infectious Disease plus Respiratory Therapists.

Ten days after arriving at a major medical center Cameron was diagnosed with X-link SCID.  It was March 13, 2011 and Cameron was 8 months old.

SCID

The diagnosis of SCID brought great confusion to John and me. What was SCID? Why had we never heard of this before? After all, I had done all the prenatal testing as well as the newborn screening. Wasn’t that all I needed to do? I knew there were no other cases of SCID in either of our families’ medical history. What I didn’t know was most cases of SCID have no previous family history.

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Immediately we began to research SCID for ourselves in addition to the information that our doctors were sharing with us. What was it? And what were our options? This is when we found out that if SCID is identified in the first months of life, such as through newborn screening, and before severe infections occur, most infants are successfully treated by a bone marrow transplant. If SCID is not diagnosed before infections, survival rates drop dramatically. Unfortunately for Cameron, he was not diagnosed as a newborn and each day that passed his chances at survival were diminishing. Although chances were slim, we had his superhero brother, Gavin, tested to see if he could possibly be a bone marrow match for Cameron. Luckily, Gavin was blessed to have been born free of this deadly condition. Four grueling weeks of treatment went by as we waited and hoped Cameron would recover enough for a bone marrow transplant. As much as we did not want to accept it, Cameron was unable to fight off the deadly pneumonia that had taken hold of his little body and crippled his little mind. After all the weeks of intense treatment and prayers we were informed that we needed to say goodbye to our baby boy and let him go. On March 30, 2011, the day he turned 9 months old, we finally got to hold Cameron in our arms as he slipped away from us.

After his death we requested Cameron’s newborn bloodspot, which luckily we opted to have stored, be screened for SCID in a small pilot program that had begun in October 2010. We were informed that Cameron did test positive for SCID at birth after his newborn blood spots were screened. We found out 9 months too late for our Cameron.

With SCID newborn screening, Cameron’s life and our lives would have been much different. The night we left the hospital without Cameron I dedicated myself to doing what is in my power to educate and advocate for newborn screening. Since that time I have become a volunteer educator for the SCID pilot study in Texas as well as an advocate and supporter of the Save Babies Through Screening Foundation. Education about newborn screening is something that I will continue to passionately help others with in Cameron’s memory.

Does your state’s newborn screening panel include SCID? Find out here

 

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