Alison “Ali” Riggs, and her husband Rock, are two of the AHA advocates helping to guide a bill through the Hawaii State Legislation this year that would require all newborns to be screened for critical congenital heart defects using pulse oximetry prior to discharge from their birthing center.
Below is their story:
My 3-year-old daughter Grace was born with a severe heart defect. Her defect was not detected until she was six days old and was struggling to live. She spent the first eight months of her life in a children’s hospital, suffering unimaginable pain and fear.
We were extremely fortunate that she survived although her life will be a challenging one. If we would have known about her condition right away, her body, specifically her lungs, would most likely be stronger and her hospital stay and subsequent care would have been less.
A pulse-ox test is simple, painless, and inexpensive. Eight months in the neonatal intensive care unit is none of these. That’s why we’re strongly supporting the American Heart Association’s efforts to pass legislation requiring all babies to be screened prior to discharge. It will save and improve lives.
Ali and her husband have helped us educate lawmakers about this screening and its importance. Pulse oximetry is a simple, inexpensive, non-invasive screening tool used already by most hospitals that measures blood oxygen levels and pulse. When placed on a baby’s hand or foot it can indicate, if measures read low, the possibility of a congenital heart defect and the need for more extensive testing. Babies born with congenital heart defects sometimes don’t exhibit symptoms until days or weeks after being discharged and returning home. In critical cases, by the time the symptoms appear, and parents recognize them and return to the hospital, it might be too late to save the baby or long-term complications can occur. If identified early, many congenital heart defects can be corrected through advance treatments allowing the babies to go on to live relatively normal lives.
The Hawaii pulse oximetry screening bill passed out of the State Senate in March and was headed into a conference committee where final language was hoped to be agreed upon by House and Senate representatives. If approved it will move to Governor Ige’s desk for signature into law. Stay tuned for an update on the bill’s status in next month’s You’re The Cure newsletter.