It's devastating when we hear that a baby or toddler has passed away. But what's perhaps even more devastating is when we find out that their deaths could have been prevented. Infant screenings are required for a reason. When babies are screened for various syndromes and diseases at birth, they are more likely to live healthier and longer lives than babies who weren't. We are going to discuss why it's crucial to have your infant screened--and why so many babies aren't.
The history of infant screening:
In the 1960s, Dr. Robert Guthrie invented a blood test that would determine whether or not an infant would be diagnosed with a metabolic disorder called phenylketonuria (PKU). With more advanced technology, the test has evolved, and in 2004, the Mayo Clinic invented software that can diagnose not just that disorder but up to 60 different illnesses.
Even though some states don't use this software, every state is required to provide some form of infant screenings. Most screenings can flag up to 34 illnesses. In 2014, President Obama signed a bill after reports of several infant deaths and disabilities were found that could have been prevented. And yet--in 2017 a report by the U.S. Government Accountability Office found that most states don't meet the bookmarks to screen 95% of blood samples within seven days of birth. These aren't babies whose parents declined to do the test because of religious beliefs. They were parents who didn't know their options and legal rights.
What could screenings reveal?
Methylmalonic acidemia is one of the most life-threatening illnesses that can be found during an infant screening. In this disorder, the body can't break down certain fats and proteins. Usually the baby will appear healthy, then develop progressive brain disease along with a seizures and strokes. When this is diagnosed early, the disease can be helped by following a certain diet. However, if this isn't screened, the baby is likely to die in his or her first year.
While methylmalonic acidemia is a very serious disorder, it's just one that could be found. Approximately 12,000 newborns a year are diagnosed with a disorder by way of screening, including metabolic, hormonal functional and heart disorders. Congenital hypothyroidism, a hormonal disorder in which the child's thyroid is missing or doesn't work properly, is the most common. For a child under three years of age, it's crucial for the thyroid hormone to be functioning properly in order to help their brain, bones and organs develop. Fortunately, if congenital hypothyroidism is diagnosed early, it can be cured by taking a pill daily.
Since some states test cannot identify congenital hypothyroidism and other illnesses, a baby will not be flagged for having them. However, a defect will be diagnosed as not normal, and the baby will be taken to get more tests immediately, where congenital hypothyroidism and other illnesses can be detected.
What is an infant screening? When does it happen?
- An infant screening is a state public health service that makes certain every newborn is tested for serious health conditions.
- There are three different parts of a screening: a blood sample, a heel stick, and a pulse oximetry.
- The test is generally performed when an infant is 24 to 48 hours old. The timing of the test is crucial. If the baby is less than a day old, several defects will not be flagged on the test. Some states require a second screening when the baby is two weeks old.
- Often, health professionals still use the term PKU test when testing the infant, even if the screening encompasses more than that.
What if I choose to have a home or water birth?
- If you choose to have your baby at home, or at a birthing center, you should talk to your health care provider about having your infant screening when the baby is one to two days old.
- You can also discuss having a second screening when your baby is two weeks old, even if your state doesn't require you to do so.
Cost?
- With health-care debates getting heated, the obvious question is: "How much does this cost?" Most states collect a fee for infant screening, and most insurance covers them. However, every state finances their infant screening process differently.
- A baby will receive an infant screening no matter what insurance you have and no matter what state you live in.
- Currently, you are not responsible for the cost.
Do I have to request an infant screening?
- It's ridiculous for anyone to expect you to say, "When are you going to prick my babies foot?" You just gave birth to a human! No, it's not your responsibility to ask if your infant is going to be tested for medical conditions.
- The medical professional should always be the first one to address the topic of medical testing.
Will the infant screening hurt my baby?
- Remember that your baby just went through a very traumatic experience down the birth canal. A blood and hearing test should not physically hurt your baby. However, just as adults feel minor discomfort during procedures like this, so will your baby.
- Studies show that if you hold your baby during the heel prick, they are most likely to not feel much discomfort. Your baby will also feel safer and be less shocked if you hold them, rather than your partner or the medical professional in the room. Infants haven't grasped that they are no longer attached to their mothers yet.
- Nurse/feed your baby before and after the infant screening. This may help them possibly sleep during and after the test. It will also prevent light-headed symptoms, which we often feel after giving blood.
What if my child didn't have an infant screening?
If your baby has been denied an infant screening due to a careless mistake, you are the victim of medical malpractice. This law violation also can be argued as child neglect. Child neglect in American law is child abuse. If your child is showing signs of delay and/or sickness, it's very possible that they weren't screened at birth. Sometimes mothers aren't fully aware of what's going on right after they give birth, so if your infant wasn't screened, it's not your fault. You and your child deserve justice.
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