For seven long years, we lobbied in Washington to have SCID added to the Newborn Screening panel. Without diagnosis, life expectancy for SCID patients is only one year. There was an inexpensive and efficient test to diagnose, treat, and possibly save these babies who would otherwise likely die before their first birthday. We were unwilling to let babies continue to die from a treatable disease.
So, we kept pushing. Wisconsin had been an early adapter of newborn testing, and finally, in 2007, we agreed to fund half of the pilot program to screen for SCID in the state. The pilot program began in January 2008 and tested 10,000 newborns over the course of the program.
Dawson Bornheimer was the state’s first infant to test positive for SCID on June 12, 2008. Doctors were able to pinpoint the genetic cause of his SCID and determined that he could be treated with an umbilical cord blood transplant. Dawson’s perfect match was located all the way in Germany!
With a match secured, the transplant was scheduled for September 25, 2008. We were stunned. The procedure that would change Dawson’s life was scheduled to take place on what would have been Jeffrey’s 38th birthday. It was like a rebirth of the next Jeffrey! We were invited to Wisconsin for the procedure and met with doctors and state Newborn Screening officials before meeting with Dawson’s parents.
Thankfully, after four days in the ICU, Dawson’s tiny body finally started to build a new, healthy immune system from the donated cord blood. Four months later, in January 2009, Dawson returned home, concluding the end of the pilot study. Wisconsin officially adopted SCID for Newborn Screening! We were thrilled, and more committed than ever to find and save the next Jeffreys.
Finally in 2018, Newborn Screening for SCID was implemented in all 50 states, Washington DC, Puerto Rico, and the Navajo Nation. Dawson made history as the first baby with SCID cured because of Newborn Screening. Thanks to his successful diagnosis and subsequent treatment, so many precious lives have been saved. Today, over 34 million babies (and counting) have been screened in the United States. We have expanded our efforts globally to identify and cure children who need our help, and we'll keep going until stories like Jeffrey’s become rare.