Ethan's story - SCID

Every child is a blessing. On October 29, 2001 our three year old daughter, Madison, my husband, Jason, and I were exceptionally and doubly blessed with the birth of our second healthy daughter, Brooklyn. We were thrilled with our perfect little family. Brooklyn received a clean bill of health on day one and every checkup thereafter. Shortly after Brooklyn turned three months old, however, she contracted a simple cough. A simple cough that ended up throwing our perfect little family into a heartbreaking nightmare.

Brooklyn received a thorough check up and the doctor suggested cough syrup. Within two weeks we sought medical attention again because her cough was getting worse. Brooklyn was hospitalized for three days and diagnosed with RSV. A spot of pneumonia was also found on her left lung. She was released on antibiotics and steroids, however, we returned to the emergency room two days later. Brooklyn was hospitalized again and another spot of pneumonia appeared in her lungs. She was released four days later.

Within 24 hours of her release we frantically called 9-1-1. Brooklyn was lethargic and experiencing excessive diarrhea. She was severely dehydrated and needed to be resuscitated. She almost died in the emergency room. I have never seen a living being look so weak and fragile. She was too weak to even cry. I’ll never forget how she looked at me as if she wondered why I wasn’t helping her. Now the doctors were concerned. Brooklyn was tested for allergies and cystic fibrosis. Every test came back negative and the doctors’ conclusion was that she had just had a bad reaction to her antibiotic.

Following this near tragedy, we took Brooklyn back to the doctor every three to four days. Her appetite was poor, she was still coughing and she just wasn’t recovering. Her medications were slightly adjusted and she was continuously sent home. When I asked if she should be hospitalized I was told that was a short term solution.

Less than one month after we almost lost her, we rushed Brooklyn back to the Emergency Room because of her persistent coughing. This time she had double pneumonia. I saw that look again, wondering why her mommy wasn’t helping her. It was the last look she gave me. She never came home. The doctors did everything they could but the pneumonia became increasingly worse and she was sedated and placed on an oscillating ventilator. Her condition never improved.

Eleven days later she passed away. For eleven days she was medicated, ventilated, poked and prodded. Numerous tests were run and every test came back negative. I was told she was a mystery. The most frustrating part of losing our beautiful daughter was that she was never given a chance to fight. We never knew what we were fighting. We felt so helpless and lost.

Hours before she passed away, more blood work was taken and sent to Toronto. It was that blood work that finally gave us a diagnosis. Brooklyn had been born with Severe Combined Immune Deficiency. She had no immune system to fight even a simple cold. The most hopeful news at that point was that it was a treatable condition. It was regrettably too late for Brooklyn, but we were encouraged to have more children. We were informed that each child of ours only had a 25% chance of being born with SCID and in the event they were, treatment options were available.

Our precious little Sheridan was born a year and a half later. Her cord blood was tested and within 24 hours she was given a clean bill of health. We were comforted to know that we would not have to endure another tragedy and were saved a tremendous amount of anxiety.

Less than 2 years after that we gave birth to our sweet little Ethan. However, this time we weren’t so lucky. Ethan also had Severe Combined Immune Deficiency. We were devastated but constantly reassured that there was a cure. Ethan spent 253 days in reverse isolation at The Hospital for Sick Children in Toronto. The only cough he had was the one babies notoriously fake for attention. He received a bone marrow transplant and was released 6 days before Christmas. That was seven years ago. Today Ethan is 100% perfectly healthy and medication free.

The Province of Ontario’s decision to include Severe Combined Immune Deficiency as a part of their newborn screening program will save many helpless infants from life-long health issues, suffering and possible death; and their families will be saved from the anguish and pain that our family endured.