Tomorrow is an important day for the heart community in Texas. Many of us have been hard at work in Texas to bring to the attention of legislators that ALL babies born in Texas should have a simple pulse oximetry test before leaving the hospital to ensure that the baby's oxygen saturation level is where it should be. While this simple, inexpensive, non-invasive and easy-to-administer test will not detect all heart defects, it can at least alert the medical staff that something could be amiss in an otherwise healthy-looking infant.
Even though my husband thought something was wrong with Alex the moment he was born, he was told that Alex simply had newborn breathing. Even though, for 8 weeks, I continued to be concerned about Alex's sleepiness and the fact that he couldn't stay awake while nursing and never awoke crying and wanting to be fed, I was told by lactation consultants, nurses and doctors not to compare Alex to my firstborn, Joey and that he was "petite" just like I was. Even though I gave my August-born baby a sunbath after every daytime feeding and I was concerned about his jaundice, I was told that he just had "breastmilk jaundice" after they measured his bilirubin and he wasn't yellow enough to be put under the bili lights.
One simple test, pulse oximetry, would have told us what nothing else did. My son's oxygen saturation levels were in the 80s. This meant he wasn't really blue to the untrained eye but since most babies have an oxygen saturation level of 99-100, clearly something was wrong!
Had Alex been given this simple, non-invasive test when he was a newborn, red flags would have gone up and an x-ray would have revealed a smaller-than-usual heart. An ultrasound of the heart would have revealed that Alex had a number of congenital heart defects. A catheterization would have shown that Alex needed open-heart surgery.
Alex never would have gone into congestive heart failure. My husband and I wouldn't have been treated like over-protective parents. We wouldn't have spent 8 weeks wondering why Alex was so hard to feed and why he wasn't gaining any weight.
I remember that shortly after Alex had his open-heart surgery and we were home again there was another employee who worked with my husband who had a baby. Sadly that baby died in its sleep. I couldn't help but wonder if that baby also had a heart defect -- which might have been picked up with pulse oximetry. We'll never know. Instead, the mother was told the baby died of SIDS (sudden infant death syndrome). Passing House Bill 740 could mean catching a potentially fatal heart defect so one less infant dies.
We were lucky that Alex had a good outcome despite the missed diagnosis during his well-baby check-ups and visits to Newborn Follow-Up and with lactation consultants. Not all babies are so lucky. If this bill saves just one baby's life, it will be worth all the letters that we in the heart community have sent to our legislators to pass bills like this one. Bills like this one have been passed in other states already. My hope is that someday babies will receive pulse oximetry as standard care before leaving the hospital no matter where they are born.
If you have a minute, please write to our Texas Senators to let them know how important this bill is to you. It will be voted on TOMORROW!
Here is the contact information for John Coryn: www.cornyn.senate.gov/public/index.cfm?p=ContactForm
and here is the contact information for Ted Cruz: www.cruz.senate.gov/contact.cfm
I intend to write to both of them again and plead with them to pass HB 740. HB 740 was referred to the Senate and the Health and Human Services Committee. The hearing starts at 9:00 a.m., so this item will be taken up sometime after 9:00 am. It should be live on video as this committee is meeting on the Senate floor.
mom to Joey (21; heart healthy) and Alex (18; DILV, single ventricle)
Children's Heart Foundation-Texas Chapter Vice President
Owner of Baby Hearts Press
Author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation
Editor of The Heart of a Mother, The Heart of a Father and Hypoplastic Hearts Through the Years (in progress)