I met Sarah Wilkerson when I was hired as a postpartum doula to help welcome her daughter home. Sarah was blessed with three children but I would only be helping with two. Sarah says she learned the importance of newborn screening the hard way. As a mother who chose a natural birth path, including Bradley method classes, she felt a lack of information on the screening done for newborns and even some sway against them. After her own researching Sarah and her husband decided that going forward with the testing was the right decision for their family. Sarah had her first baby Noah, safe and naturally on a Friday. After arriving home, Noah was lethargic and not the best eater. On his fourth day, Noah stopped breathing, and they were unable to revive him. Noah’s screening test showed that he was positive for MCADD, (Medium-chain acyl-CoA dehydrogenase deficiency) A rare metabolic genetic disorder, but he was born on a Friday, and the lab was not open on the weekend. His results were not processed in time to save him.
After losing Noah, Sarah became an advocate for change in newborn screening, formerly known as PKU testing. Sarah has traveled several times to Washington DC to lobby for change. She speaks with the governing board quarterly and was featured in the Milwaukee Journal Sentinel – Deadly Delays series. Her efforts, along with many others with stories like hers, have created great changes in the ways newborn screenings are handled. It is now mandatory that Labs are open six days a week, and hospitals are no longer allowed to “batch” screenings. Batching is the practice of holding tests until there are enough births to warrant the postal service. The tests now include at least thirty different diseases, with many hospitals and labs looking at over fifty different disorders.
With policy changes well on their way, Sarah says the biggest hurdle now, is getting the education to parents and loved ones.
One in every three hundred families will be affected, and she hopes to see every labor method and childbirth education course, cover this incredibly important issue.
I was so lucky to work for Sarah and her amazing family and I strive to share the education she gave me on newborn screening. ~Lauren