March 02, 2015

There is no doubt in the medical community that cord blood banking has proven itself to be vital in the treatments of many diseases. Cord blood banking preserves the precious stem cells left over in a baby’s umbilical cord after birth and makes them accessible for future treatments. For some of those diseases, however, timing is crucial and early intervention is necessary to be effective. For this reason, newborn screenings are especially key to ensuring the most positive outcome possible for a child.

At birth, babies undergo tests and screenings to gauge their overall long-term health and survivability. Healthcare professionals perform these screenings because the early detection of many diseases can mean the difference in life and death or disability for these tiniest of patients. Typically, with no more than just a few drops of blood drawn from a baby’s heel, doctors can gain incredible insight into the child’s overall wellbeing. The routine tests can identify certain abnormal genetic, hormonal, and metabolic complications. Many conditions, if discovered early, will respond to the appropriate corrective measures and treatments, allowing the sick child the best chance at a positive prognosis. The screenings are beneficial tools for healthcare providers and give parents peace of mind knowing their baby’s complete health is being examined.

Regulations dictating which screenings must be performed varies from state to state. Tests for several disorders are considered standard across the board in the United States, but some locations have opted to include additional screenings as a precaution. But here’s an unnerving thought to consider: what if your child is born with a condition that is not included in your state’s required screenings? Even worse, what if the condition he or she has is treatable but only with early intervention? And, sadly, since the testing was not required, the child went undiagnosed until it was too late for treatment.

This heartbreaking situation is exactly where a Pennsylvania family found themselves recently. When Hannah Ginion was born in early 2013, she was the picture of health. The screenings performed on her at birth came back normal and no one suspected anything was amiss.

But it was.

When Hannah was 4 months old, she began to show signs that something was not right. Soon, she was diagnosed with the rare, incurable degenerative nervous system disorder called Krabbe disease. This devastating diagnosis wasn’t the only crushing news the family would receive, however. They learned that while there is no cure for the disease, it is treatable with an umbilical cord transplant if discovered early enough. Unfortunately, Hannah’s diagnosis was not. She passed away from complications of Krabbe disease in December 2014, less than a month before her second birthday.

Since her diagnosis, Hannah’s parents have been advocates for changes to Pennsylvania’s newborn screening requirements to ensure no other family has to endure the same heartache and loss. Their actions led to the passing of Hannah’s Law – legislation passed in her name that adds Krabbe disease to the state’s list of mandatory newborn screenings. They know that the disease cannot be prevented but their diligent efforts are helping prevent other families from facing this same struggle. They stress that parents also need to know treatments for Krabbe disease are available if it is discovered early enough and its diagnosis does not have to mean devastation. Cord blood banking is providing hope for families affected by Krabbe disease. It is just one of the more than 80 diseases and disorders that can be treated with cord blood and cord blood banking.

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