Sunday, June 12, 2011

Pulse Oximetry: Why it should be mandatory

August 5, 2003, my beautiful baby boy was born after an uneventful pregnancy and delivery.  When he was born, however, he didn't cry.  I asked over and over, "what is wrong with my baby?"  The answer repeatedly was, "nothing, he is perfect"  and "we just need to get him started".  They slapped his feet, they jiggled him around, they sat him up, laid him down, finally, he let out a weak cry.  Then it was heartier.  Hooray, he WAS perfect.  They bundled him up and gave him to me. 
The nurses and midwife then left the room in order for us to bond with him.
Our family came in. 
When my mom saw him, the first words out of her mouth were, "he's black!  Look at how dark he is"  I looked at her with a weird look on my face.  She went on, "look at his hands, they are so dark"  I told her it was fine, all babies were born with blue hands and feet.  I was seeing him through mother's eyes.  I saw nothing but perfection.
While we were introducing the brothers to Zachary, unbeknownst to us, my step-dad was in the hallway demanding the nurses take him and run tests.  They refused.  They said he was fine.  My step-dad persisted and finally the nurses took him to give him a bath. 
Time went by, and they didn't bring him back to us. 
After what felt like an eternity, the doctor came in to inform us that they had noticed he was blue while bathing him, did a pulse ox test, and found his SATS to be low.  He was placed under an oxygen hood.
No one knew what was wrong with him.  We were told things like, "he was 3 weeks early, his lungs are immature" "he's a big boy, and big boys tend to have wetter lungs" "his lungs are wet, they'll dry out".  They ran test after test.  All were negative.  They started him on antibiotics in case a pneumonia was missed. 
Finally, an echocardiogram was performed, and our world turned upside down.
The important thing is, because of the pulse ox, they knew something was wrong, and he was put on oxygen right away.
Zachary was diagnosed with a congenital heart defect called Total Anomalous Pulmonary Venous Return and an Atrial Septal Defect.  A complex, life threatening heart defect.  The morning after he was diagnosed, he had open heart surgery.
Then thing was, there was nothing to indicate he had a CHD.  No heart murmur, nothing.  Just a low pulse ox.  While we waited for the cardiologist to read the echo, we asked the pediatrician if she thought it was his heart.  She said no, not at all because he didn't act like a baby with a CHD.
Fast forward six years.  I was pregnant with my sixth child.  I had several fetal echoes and was told that her pulmonary veins could be seen and looked great.  I was told over and over that her heart looked great and there was nothing to indicate anything would be wrong.
When she was born she looked so great.  She was breathing so well.  I remember telling her, "you're such a good baby, not even grunting, you'll avoid a NICU stay!"  Later in my room, Matt was holding her, I told him to cover her up, she looked cold.  I look back and realize how silly that was.
Again, they took her for a bath, and didn't bring her back.  After about an hour, Matt went to the nursery to find out what was going on.  The nurse said she thought that Natalie looked dusky so did a pulse ox test.  She had called in the pediatrician because her SATS were low.  When the pediatrician got there, we told him about Zachary.  He did a blood gas test, which came out bad.  An echo was then ordered and it was discovered she had the same defect as her brother.
The interesting thing is how well she did.  The reason babies stay in the hospital for so long after heart surgery is often because of feeding issues.  Because of this they wanted to hold out as long as they could to give Natalie the chance to really learn how to eat in hopes that she wouldn't forget when she was able to eat again.  She was hooked up to monitors and Matt and I commented on the fact that watching the monitors was like watching someone die.
She looked sooo good.  And yet we watched and one day her respiration rate went up.  The next her O2 SATS went down more.  And still she looked good.  She didn't look like a thing was wrong with her.  Finally at six days old, because the monitors said so, the doctors said she needed her surgery that day.  Still, nothing looked wrong.
TAPVR is so often missed at birth.  The babies look fine.  Unfortunately, many TAPVR babies pass away without being diagnosed.
I will never forget the nurse who decided to test Natalie.  In my opinion, she is a huge reason my daughter is here today.
So, what is pulse oximetry testing and what's the big deal?
We've all seen a pulse ox test.  It is the little red light they put on your finger when checking your vitals.  They are measuring the amount of oxygen in your blood.
To do this test in a newborn, costs less than the cost of a bandaid.  Hospitals crank the prices up and insurance doesn't have to pay for it.
 New Jersey has now made pulse ox testing mandatory on newborns 24 hours old.  This means insurance will have to cover this non invasive test.  It doesn't mean that a parent can't deny it, though I'm not sure why they would.
In recent studies they have learned that about a third of one percent of babies tested at 24 hours old had false positive results. 
A pulse ox test won't catch every CHD, but it will catch many. 
I have been reading study after study to put in here, but I'll let you google it.  Just google Pulse Ox screening newborn and you will find that 1 in 15,000 babies will be born with a critical CHD and half of those will die before a diagnosis is made.
People think that a CHD can be caught by listening to the heart.  This is so wrong.  My kids didn't present with a heart murmur.  Many don't. 
We screen our babies for things like hearing loss and PKU without giving it a second thought.  It's just routine.  The false positives from those tests are so much higher.  Hearing tests cost much more than a pulse ox and while hearing loss is devastating, it isn't life threatening.
It is so important that we make this test mandatory.  Insurance companies need to pay for this, and hospitals need to not jack up the price. 
Babies die from detected CHDs, but how tragic that any baby should die from an undetected CHD, especially when a simple test could pick up a problem.  No parent should have to experience this. 
So, what can you do?
Write a letter to your state representative.  Tell them how important this is. 
Sign the petition that I've linked to on the side bar.
And most importantly, if you are pregnant, or ever get pregnant, please demand a pulse ox test on your baby at 24 hours of age. 
Yes, this is long.  But it's personal to me.  Not a single day goes by that I don't thank God that my babies are still here.  I know how easily it could be different.  TAPVR is one of the top 5 defects that isn't detected at birth.  I am just so, so thankful that people had the sense to perform a pulse ox on them.

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