Vermont AHA volunteer Kathryn Towle is also the mom of a toddler with a critical congenital heart defect. She took action recently to urge House Health Care Committee members to take up H.639, legislation to require birthing facilities in Vermont to screen infant for congenital heart defects using a simple pulse oximetry test. Her story is below.
As the mother of a son born with a Congenital Heart Defect on June 19, 2012, I strongly support the mandating of pulse oximetry testing of newborns in Vermont. My son struggled to breathe due to his multiple heart defects, and with such a strain on his heart and lungs for his first few months of life, he was hospitalized for various respiratory infections including RSV, Bronchitis, and Flu. We suffered through multiple transports via ambulance from our home to the Vermont Children’s Hospital, one trip of which being on Christmas Day when he was lethargic due to lack of oxygen getting to his brain.
This could have been addressed and prevented if he had proper screening upon birth.
Rather, at his 3 month check up, his Pediatrician noted what he thought was a heart murmur, and recommended that we see a Pediatric Cardiologist at the UVM Medical Center to have it checked out. About 1 month later when we were able to see the Cardiologist and one of the first few screenings they did upon arrival and check in was the quick and painless pulse oximetry or “Glow Toe,” as Jack calls it now, indicated a slightly lower level of oxygen than would be in the typical range for a 4 month old baby, which demonstrated a problem before his Echocardiogram or his one hour long ultrasound of his heart and lungs.
Had this simple, painless test been done upon birth, we may have been able to have his repair surgery months earlier and avoided so many hospital stays with over 30 nights cumulatively away from our older child, our home and our jobs. Due to the delay in his surgery, Jack’s growth was significantly delayed and his physical development fell drastically behind the national standards. Jack wasn’t able to have a “traditional” first year of milestones; pushing yourself up at 3 months, sitting up at 6 months, walking at 12 months. Each of these milestones was not achievable for my son while his little heart was working at double the capacity to only perform its function and there was no additional capacity for the things he should have been accomplishing.
My family is blessed that research and medical efforts exist to have repaired my son’s heart and now he is an amazing 3 year old little boy attending Preschool with his peers. He may be smaller than his classmates, but his spirit and intelligence is amazing and makes my husband and myself so proud every day. If Pulse oximetry screening is supported by the American Heart Association, the American College of Cardiology, the March of Dimes, the Department of Health and Human Services and many other health organizations, I fully support making this test a mandatory screening procedure in the State of Vermont.
I commend the hospitals that are already screening infants with pulse oximetry. But without a requirement, there is always the chance that a baby could slip the cracks undetected, and that would be one baby too many. No parent should ever have to bring their child home undetected when we know there is this inexpensive, life-saving tool. I pray that requiring this simple test will prevent the experience that we went through for many other families.
You can take action as well by contacting House Health Care Committee members and urging them to take up this important legislation soon. Members can be reached at: http://legislature.vermont.gov/committee/detail/2016/15
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