Hello, we are the Huber family and this is our journey with raising three wonderful children with MCAD. We will forever be grateful for the education, ongoing research and newborn screening test. Our hearts go out to any family that has lost someone to MCAD. What we have learned is that MCAD is a livable disorder and our three children: Colton 10, Haley 6, and Carter 4, are proving it everyday. We would like to share the 10 lessons in life that MCAD has taught us. I am sure there will be many more as we watch these children grow.
10 Lessons in Life - MCAD
Lesson #1 We try to consistently stick to the routine (meals, snacks, and bed time schedules). Easier said then done sometimes since our children love sports and outdoor activities.
Lesson #2 We never leave the home without nutritional drinks and snacks.
Lesson #3 We have a protocol letter in all vehicles so we can travel and will be ready in case of emergencies.
Lesson #4 If our children are sick with even a cold it will take more nursing to get well.
Lesson #5 We hand packets of educational material about MCAD out to any caregiver and teacher along with an explanation from mom and dad.
Lesson #6 Our children take extra snacks and drinks to school. This helps to keep their energy up and stay healthy.
Lessons #7 If our children are sick with the flu or fever we take them to the Children’s Hospital for the best care.
Lesson #8 We live in a very warm climate, so plenty of liquids and air conditioning are a necessity.
Lesson #9 Newborn Screening and expanded Newborn Screening should be done at birth.
Lesson #10 Our children are very brave during metabolic crisis.
We did not always know that MCAD, “the silent disorder” was living among us. Of course, you never forget when you receive the phone call from the doctors to say that the screening came through indicating that MCAD is present. When our daughter Haley was born in 2004, we got that inevitable phone call from our family doctor. I was completely devastated seeing this normal child and wondering what the future meant for her. We soon were in a metabolic clinic and had a wonderful doctor that helped us through all of our questions. Through the Metabolic Specialist I realized that the MCAD prognosis for Haley was found in the expanded newborn screening test.
After Haley’s diagnosis, we went on to test our oldest son, Colton, who was born in 2000 and the results came back with positive MCAD. He had missed the screening since the MCAD was not added to the expanded newborn screening test until early 2001. Our baby, Carter, was born in 2006, after testing in the hospital and follow up with the Metabolic Specialist we soon realized his results would come back positive MCAD.
Looking back through the years we had many close encounters and are very blessed for our children. Every time we have an episode it is scary and exhausting, but at the same time we are relieved for the knowledge to get them better. The Children’s Emergency Room is now very familiar with us and the staff is wonderful. Three MCAD children and only five visits to the emergency room, I consider our family very fortunate.
We are so blessed that we now have some education and know what to do in a metabolic crisis. We frequently visit FODSupport.org to find any information that could help our family and we appreciate all that you do for so many children. Thank you FOD Support.org ~ we look forward to growing, sharing and helping other MCAD families.
The Huber Family
Chad, Kelly, Colton, Haley and Carter