For most parents, the couple days in the hospital after giving birth bring a wonderful rush of emotions as you get to know your new baby. They are often quite busy with visitors and health care staff checking in on you, and you might not even remember when a nurse or phlebotomist pricked your baby’s heel and put a few drops of blood on a special card to send for testing.
But those few drops of blood just might save your baby’s life.
The card is used for Newborn Screening, which is a special blood test for all newborns done shortly after birth (within 24 to 36 hours is best). The blood from your baby’s heel is sent to the Wisconsin Newborn Screening Laboratory in Madison where it’s tested for 44 rare, serious, inherited disorders that, if not treated quickly, can lead to severe health problems and sometimes even death. In Wisconsin it is the law that all babies be screened before leaving the hospital, or if not born in a hospital, screened within seven days. Parents can decline only for religious reasons. The test is simple and safe.
Every year the Wisconsin Newborn Screening Laboratory tests blood from the 69,000 to 70,000 babies born in Wisconsin and about 125 babies will be identified with a disorder. Thousands more are identified nationwide by screening programs across all 50 states. Some of the most commonly known disorders screened are sickle cell disease, cystic fibrosis, hypothyroidism and phenylketonuria (PKU). Wisconsin also screens for hearing loss. The sooner a baby’s hearing loss is discovered, the better his or her chance to learn to communicate, bond with caregivers and achieve early learning.
Why is it so important to screen each and every baby? It is very difficult and sometimes impossible for doctors and "midwives to recognize these disorders at birth. In fact, most of these disorders are called “hidden disorders” because affected babies don’t show any signs or symptoms until they experience a medical crisis. It’s vital that the baby’s blood be tested through Newborn Screening. Early detection of the disorders leads to early treatment, possibly before symptoms occur, which can prevent some of the serious health problems like brain damage or even death.
Newborn Screening can tell which babies have a specific disorder or can help identify who may be at an increased risk for a disorder. Further testing may be needed to find out if the baby actually has the disorder and needs treatment or is healthy. The baby may need to have another blood sample sent for repeat Newborn Screening or other diagnostic tests might need to be performed. If your baby has a result that requires follow-up it does not necessarily mean your baby has a disorder, but that more information is needed.
If a disorder is confirmed by follow-up testing, your baby’s doctor can work with specialists to begin a proper treatment program. The disorders found through Newborn Screening require a variety of treatments depending on which one is identified. Some need a special diet, others may need medicine. If treated early, many babies grow up to lead a normal healthy life. Early diagnosis and treatment allows for the best chance of normal growth and development for your baby.
The best care
How do you get the results for your baby? Your health care provider will be sent a report when all of the testing is complete, usually within a week after the lab receives your baby’s Newborn Screening card from the hospital. Most NBS results come back "normal” so many physicians might not mention NBS results to new parents. Ask for a copy of the results when your baby is seen after birth, and keep it with your baby’s other important information.
How can you help make NBS successful? Be sure the hospital knows your most current contact information before leaving the hospital. Give the hospital the name of the health care provider who will be seeing your baby after you leave the hospital. If your baby’s health care provider asks you to bring the baby back for a repeat test, do so right away.
Newborn Screening turns 50
2013 marks the 50th anniversary of Newborn Screening in the United States. In 1963, Dr. Robert Guthrie developed a method to test the blood from newborn babies for Phenylketonuria (PKU), a metabolic disorder that if left untreated can lead to neurological problems, including severe mental retardation. If treated with a special diet, complications can be prevented and individuals with PKU can lead a normal, healthy life.
While technology has advanced in the past 50 years, the special test card used to collect a baby’s blood sample is pretty much the same as the one used in 1963. Our goal is to raise awareness about this comprehensive public health program administered by the Wisconsin Department of Health Services and the Wisconsin Newborn Screening Laboratory, with diagnosis and treatment provided by clinical consultants and health care providers across the state, and support services provided by nurses, genetic counselors and nutrition professionals.
For more information, visit: slh.wisc.edu/newborn, dhs.wisconsin.gov/health/children/newbornscreening, savebabies.org, babysfirsttest.org
The Milwaukee Journal Sentinel published a powerful new project about flaws in the nation's newborn screening programs in their series called Deadly Delays.
Search here for stories of babies affected by the delayed test.
Search here for state-by-state interactive with hospital-by-hospital data.