Imagine that you give birth to a beautiful baby who physicians say is perfectly healthy. Then imagine that once you bring your newborn home, she turns blue and stops breathing, or becomes pale and limp at night, or starts bleeding and having seizures. Seeing a little one become extremely sick is tragic. It is especially devastating when a parent realizes that the sickness could have easily been prevented.
Soon after birth, a baby’s blood is routinely drawn and sent to a lab in order to screen for certain disorders (usually genetic) that can be treated if detected early. The reason these samples are drawn from every single newborn baby is because the disorders for which the lab is testing can cause permanent brain damage, such as cerebral palsy, or death if not quickly recognized and treated. A shocking report from the Milwaukee Journal Sentinel found that each year, tens of thousands of these crucial tests are delayed and sometimes not even performed. The blood is supposed to be analyzed within 24 hours of a baby’s birth, but researchers found that far too often, the analysis took several days or a week, and in some cases, samples were lost.
Approximately one out of every 800 newborn babies has a potentially severe or deadly condition that can be easily treated and managed if recognized soon after birth. Newborns with these conditions often appear healthy but can become devastatingly sick within days. All states require soon after birth screening for potentially deadly disorders; some states require testing for as many as 56 conditions, while other states require screening for as few as 28 disorders.
One disorder that is easily treatable but deadly if not treated is called galactosemia, which is when a baby cannot digest the sugar in breast milk and formula, which makes ingesting these products poisonous for the baby. A baby that became permanently brain damaged as a result of failure to test his blood is named Aiden. Aiden was sent home after only 4 days in the hospital. His mother seemed to be the only one that was alarmed that Aiden spit up every time he ate. Aiden contintied to spit up and he was losing weight after coming home. At 2 weeks of age, Aiden’s mother noticed that he had a rash and his stomach was puffed up, as if his stomach had an air-filled balloon inside. The family pediatrician was alarmed that Aiden had a really fast heart beat as well as an enlarged spleen and liver. An ambulance rushed Aiden back to the hospital – a 2.5 hour drive. For 2 weeks, the physicians performed numerous tests on Aiden, but could not figure out what was wrong. Eventually, physicians received Aiden’s test results, but by then the damage was done. Aiden’s body had been poisoned. Aiden is now 3 years old and he cannot say more than 2 or 3 words at once, he has a hard time feeding, and he walks unsteadily due to developmental delays.
Galactosemia can cause many problems, one of which is a high bilirubin level, which causes the baby to have jaundice. If a baby’s bilirubin level gets too high, it can enter the brain tissue. Bilirubin is toxic in the brain and can cause a form of permanent brain damage known as kernicterus. Kernicterus can cause developmental delays, cerebral palsy and seizures.
WHAT IS CAUSING THE LAB DELAYS?
Out of the 31 states involved in the Journal Sentinel’s study, 160,000 blood samples from newborn babies were tested late. Causes of delays include the following:
- In half the country, labs are closed on holidays and weekends, which means that babies born later in the week or on holidays may have their lab results delayed by several days. One little boy discussed in the study stopped breathing several times while his positive test result remained in a closed lab. A baby born on a Friday died the day before his positive results for a treatable condition were reported to his physician.
- If a hospital sends test results by mail to a lab, most states require overnight delivery or courier services. Nonetheless, it still takes days for hundreds of thousands of samples to arrive and be tested in the labs. At one hospital, 70% of samples took 5 or more days to arrive at a state lab just seven miles away. Many hospitals still send blood samples through the U.S. Postal Service via regular mail because it saves them money.
- Oftentimes, there are no consequences when hospitals ignore regulations that require them to quickly send babies’ blood samples to labs. In New York, only 60% of samples arrive at the state lab within 48 hours of collection, which is the time period required by state law.
- For nearly 2 decades, federal regulators and public health officials have discussed the need to standardize newborn screening protocols and systems throughout the country, but almost no action has been taken beyond increasing the number of disorders being tested. Most state-run programs do not follow guidelines put in place in 2005. Because of this, programs vary so widely that a baby born with a disorder in one state can have a worse outlook than if born in a neighboring state. Several state labs do not even track how quickly the hospitals are sending samples to the labs.
- Shockingly, lab administrators and public health officials in dozens of states have fought to keep the track records of their hospitals hidden. Mothers-to-be have no way of knowing if the hospital that will be delivering their babies will have delayed results of crucial blood tests.
- Some hospitals “batch” samples, or send them in groups periodically instead of each day. This saves the hospitals money on shipping charges, but it defies warnings from health officials that babies can die or suffer permanent disability from delays in treatment caused by batching. Often, delivery costs are covered by the states or insurance, but that doesn’t stop the hospitals from sending samples in groups anyway.
WHAT ARE SOME DISORDERS FOR WHICH BABIES ARE TESTED AT BIRTH?
- Galactosemia. This is when a baby cannot digest a sugar in breast milk and formula, thereby making the substance poisonous for the baby, which can cause organ failure, including liver failure. When the liver fails, a baby can have too much bilirubin in her blood (which causes jaundice), and this can be toxic to the brain, causing kernicterus and resultant cerebral palsy or developmental delays.
- MCAD deficiency. This is a condition in which the body cannot adequately convert certain fats to energy. When these fats cannot be converted, fatty acids can build up and plunge the baby into a metabolic crisis. Metabolism is the process of life sustaining chemical transformations in the cell. When this fundamental process cannot properly occur, a baby can end up dead or with permanent brain damage such as cerebral palsy.
- Phenylketonuria. This is a disorder that leads to too much of a stubstance called phenylalanine being in the blood. If the disorder is not treated, the excess phenylalanine can cause brain injury in the baby, leading to intellectual disabilities, seizures and other serious health problems.
- Biotinidase deficiency. This is a condition in which biotin is not released from proteins in the food the baby digests. This results in biotin deficiency, which can cause brain injury that leads to behavioral disorders, lack of coordination, learning disabilities and developmental delays and seizures.
These are just a few of the numerous treatable disorders for which babies are screened. Other important tests for easily treatable conditions include proper testing for hyperbilirubinemia that can cause kernicterus and adequate testing for neonatal hypoglycemia (low blood sugar), which is one of the most common metabolic problems in babies. Severe neonatal hypoglycemia is one of the leading causes of brain damage. This condition is not difficult to discover, and failure to recognize and treat it can cause the baby to develop cerebral palsy, learning disabilities and developmental delays, intellectual disabilities, epilepsy, seizures, sight problems and neuropsychiatry disorders.
DELAYED TEST RESULTS AND MEDICAL MALPRACTICE
It is against standards of care to fail to timely test and treat newborn disorders when testing is a local norm (i.e., a state regulation). There are many disorders and conditions that must be tested for and treated; failure to do this is negligence. It is the standard of care to screen all babies for common conditions such as neonatal hypoglycemia and hyperbilirubinemia. In addition, if there is any suspicion that a baby may have contracted an infection during the birthing process, the baby must be tested for the infection. Some infections that can be transmitted during birth include neonatal herpes simplex virus (HSV), group b strep (GBS) and infections associated with chorioamnionitis. Failure to quickly and properly treat these infections is negligence and can cause the baby to get an infection such as sepsis or meningitis. Infections that affect the brain can cause seizure disorders, cerebral palsy, and intellectual and developmental delays.
If your baby suffered a permanent injury as a result of delayed testing or failure to properly test and treat a condition, contact the nationally recognized firm Reiter & Walsh ABC Law Centers. Our award winning attorneys have been handling birth injury cases for over 2 decades. Birth injury cases are very complex, and our attorneys have the skill and expertise to obtain the compensation your child deserves for lifelong therapy, treatment and a secure future. We have numerous multi million dollar verdicts that attest to our success, and you never pay any money until we win your case. Email or call us at 888-419-2229.