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My Newborn Screening Journey Into Advocacy

  • My daughter, Bethany, was born a typical beautiful newborn, although she entered the world a month earlier than planned. We took her home to begin our changed lives from a couple to a family of 3. But after a few days home, we received a call to take her back to the obstetrics (OB) unit for a repeat newborn screen (NBS). We were told when we arrived that “false positives happen all the time” so we weren’t too concerned. After the second NBS was sent to the wrong lab, we repeated for a 3rd time, all the while our family doctor was anxiously waiting for the results. Finally, 8 days after her birth, we received the news “Your daughter is showing positive for PKU. Stop all breastfeeding”. What??? PKU??? I’d been an registered nurse (RN) for many years and had worked OB and poked many little heels but had never heard of a positive anything on the NBS. This began our journey into the world of low protein diets and medical formula for the life of our little girl.

     When Bethany was born, I was working a job that was an ok fit for me as a nurse, but once I began to learn more about the lack of support and insurance coverage for metabolic diseases, my career took a drastic turn for the better. I was a casual contract employee for the NBS State Program as a Parent Consultant and as time went on, I asked if they would be able to find the funding for me to do this on a broader scale, and I’d happily change my job as a nurse. They did find the HRSA funding for my position, and I began to work closely with the NBS team, the metabolic clinic and many newly diagnosed families. It was during this time that I took on the insurance companies for reimbursement of metabolic foods. I submitted the necessary documentation only to be denied over and over. Finally winning an appeal, we were thrilled to be receiving reimbursement for the very expensive low protein foods. But then came the very shocking letter from the insurance company-they’d decided to not only stop covering the low protein foods, but they wanted all the money back they’d already paid us! WHAT?? Well I knew that I was up for the battle. I couldn’t help that the proven treatment for PKU was a specific diet and not a shot or pill, but it was the only known treatment at that time.

     So the battle went on to include my partnership with another mom who had a daughter with another metabolic condition, and we created a bill mandating insurance coverage for low protein foods. We were moving along with lobbying and the insurance company saw this was coming, long story short, they agreed to begin reimbursement of foods.

     Along the way, I was also able to create Michigan PKU & Associated Disorders, Inc which is a non-profit with the mission of providing education, support and friendship to those families diagnosed with a metabolic condition by NBS. This group raises funds to support those who do not have insurance coverage for food, may need gas cards to attend clinic appointments and a wealth of other needs as determined by our Metabolic Clinic.

     I was also blessed to find a nursing job that I truly love, working at the local health department with the Children’s Special Health Care program. This allows me to be an advocate for kids and their families with special needs whether it is with the school, the physicians or any other needs the family may have to help make their lives a bit easier.

     So working as an advocate for kids with different needs has showed to me to be my calling in life whether at home or work and I can’t think of a happier place to be.

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