Brooklyn’s Story continued …

She was admitted for observation when a small spot of pneumonia showed up on her x-ray. It wasn’t until four days later that her oxygen level was stable enough to get discharged. We returned to our condo with a bag full of prescriptions and horrified that our baby had contracted pneumonia. Merely two days later, Brooklyn seemed to be wheezing again and we brought her back to the Emergency Room for a check up. Brooklyn ended up getting admitted again with another spot of pneumonia.

This admission lasted for five days and then she was discharged. The next morning she looked weak and lethargic and we called an ambulance. The next few hours were surreal. We were beside ourselves with fear. Terrified and in shock, we prayed with such desperation like we have never prayed before as the doctors worked feverishly to place an I.V. line. Brooklyn stayed in intensive care for four days and was then moved to the general Pediatric floor. Three days later we flew home accompanied by a nurse and doctor.

I spent many nights crying and praying. I just couldn’t understand why she wasn’t getting better. She had seen so many doctors. I trusted that they knew the best treatment for our daughter. I felt that I should just be patient and let the medication do its job after all I was bringing her in every 3-4 days and they kept sending her home.

Less than three weeks after we returned from Florida, Brooklyn started to run a slight fever and her coughing grew shallower. Once again, we took her to the local Emergency Room. When the nurse removed Brooklyn’s sleeper, her skin was mottled. She was placed on oxygen and an x-ray showed that she had double pneumonia. She was still exchanging enough oxygen that she didn’t require a ventilator and we were assured that she should improve within 48 hours. The 48 hours came and went. We waited another 24 hours and then insisted she be transferred to a Children’s Hospital.

There, Brooklyn was placed on a ventilator and was very unstable. Her pneumonia worsened over night and I was told she was a “mystery”. After a few days she was placed on an oscillating ventilator, the hospital’s last resource. It was my worst fear. I knew she wasn’t coming home. I knew someone, somewhere could tell us what was wrong, but I didn’t know whom.

On April 9, 2002 at five months and eleven days old, we removed Brooklyn’s breathing tube and our sweet, innocent baby passed away in our arms. We later learned that Brooklyn had Severe Combined Immune Deficiency.

There remained an emptiness in our lives, like our family wasn’t quite complete. Knowing it would never really feel complete because Brooklyn was gone, we forged ahead and gave birth to a healthy daughter, Sheridan, in 2003 and then a son, Ethan, in 2005.

A mere twenty-four hours after Ethan’s birth, a very nervous and masked doctor explained that Ethan had no T-cells. This time it would be different. Ethan was safe in his reverse isolation room at the Children’s hospital. Just before Ethan turned five months old he received his bone marrow transplant from a complete stranger. Thanks to an early diagnosis and the determination and compassion of Ethan’s physicians we were able to bring him home just in time for Christmas.

In December 2006, through the CI Society, we established the “Brooklyn Peters Memorial Fund” to promote earlier diagnosis and help educate medical professionals about immune deficiencies.

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