Richard & Deborah Hamburg's son Christian was born August 7, 1967 in Arkansas and died October 17, 1982 in California. Born a seemingly healthy 9 pounder, he was taken back to the hospital 48 hours after leaving it. Christian was about one month old when he was sent to the University of Arkansas Medical Center where he was diagnosed with MSUD. Christian had slipped into a coma and suffered irreversible brain damage before he was diagnosed at about one month of age. The cause of his death at the age of 15 was a brain aneurysm.
Now his mother Deborah is spreading the message of newborn screening with a pair of baby booties - yes, a crocheted pair of baby booties. Deborah wears them pinned next to her heart. She knows a great deal about crocheting as Product Development Coordinator for Annie's Attic, a nationally known publishing company where she is responsible to acquire crochet designs for both Annie's Attic and The Needlecraft Shop. Deborah also knows about newborn screening. She has become involved with the Tyler For Life Foundation and its advocacy for screening newborns. Annie's Attic has published a crochet pattern book called Pretty Baby Booties which contains Christian's story and information about Tyler For Life.
When someone comments on the baby booties, Deborah uses the opportunity to tell them about the simple blood test that can save babies from the devastation of MSUD and other inborn errors of metabolism, and how her son might have grown up to become what he wanted to be - a disc jockey - had he had the newborn screening test at birth. So Deborah passes out the tiny pairs of booties along with information sheets about newborn screening. She is making an effort to keep others from going through the intense pain and sorrow she experienced with her child.
You can help prevent this pain and sorrow in the lives of other parents. Visit the web site of the Tyler For Life Foundation at www.TylerForLife.com. You will find information on your state's current testing program and information about being an advocate for newborn screening. Deborah Hamburg found a unique way to spread the word. We can all do our part by telling those around us of the availability of screening for all infants for 30 diseases for a small fee of $20. Check our MSUD web site for information on supplemental screening or call NeoGen Screening, 412-341-8658, or Baylor University Medical Center, 214-820-4533.