Exciting News and Not So Exciting News.

EXCITING NEWS! 

A friend of mine has been working tirelessly on getting this accomplished. 

Good job Annamarie.

At 2:40 eastern time today, the national committee on newborn screening voted to YES to recommend pulse oximetry screening for critical congenital heart disease be added to the newborn screening uniform panel.

Annamarie Saarinen founder of 1in100 has been hard at work in Washington D.C. at Senate Hearing Committees and the like testifying, providing study data, working with the UoM among many others to make this dream a reality.

“I don’t even know what to say right now…still in shock. Was not anticipating vote until January.  Have to hug Eve and have a major cry right now.  It’s due time…all babies are finally going to be screened before discharge.  Policy priority #1: DONE!!!!!” Annamarie said.

Today is a milestone in CHD History!

Here is a link to Annamarie’s organization with a great article on why this is so important for CHD’s.  1in100

 To check out 1in100 on Facebook click here.

 Also, just so it is very clear all a pulse ox test is wrapping a band-aid looking thingy around a baby’s foot and plugging the other end into a monitor that will then read what the baby’s oxygen levels are, it takes all of two minutes and could bridge the gap between (I believe it is somewhere close to 40%) of congenital Heart disease that goes undiagnosed.  If all babies are screened before they go home it is estimated that only 4% could still be missed.  That is a lot of babies saved right there by a completely non-invasive and quick test.  You may be asking yourself  ‘why wouldn’t they already be doing this?’ I am sure that if you really think about it, it wouldn’t take you very long to come up with the answer.  MONEY.  Dr.’s are worried about the secondary cost to this.  Every baby that has an oxygen level that is low will then most likely have to have an echocardiogram preformed (ultrasound on the heart).  And what about the false positives that will scare the mother and father.  Blah blah blah.  The most important thing is saving the lives of thousands of babies born every year, let everything else fall in place after that.  If you would like to read an article that clearly demolishes these arguments click here  (Published in Journal of Neonatology June 2010). 

NOT SO EXCITING NEWS!

Back @ the Cleveland Clinic 

Thurs. we went to the C. Clinic to redo Logan’s Upper GI tests. 

It was raining and so everyone wanted valet. 

Cleveland traffic sucks and it took us 1 hour and 15 min. to make the typical 25-30 min. drive.  It was right at 7AM though. 

The test itself was pretty quick, I think the last time he had it done they did the whole bowl series because it took over 3 hours last time and this time it only took 20 mn. 

He looked so cute in his little hospital gown.  Believe it or not this is the first hospital gown he has ever worn. 

He definitely has malrotated intestines and a hiatal hernia and they will both have to be fixed via surgery.  I knew this was most likely the case but there was a tiny part of me that thought maybe just maybe this wasn’t the case.  What is very strange to me is that there was so much confusion about this at the other hospital.  At the Clinic everyone has just told me very matter-of-fact that surgery is standard when these things present.  The Clinic probably sees more of these strange occurrences.  Now I just have to find out when they usually recommend getting him fixed up. 

We are going to be going to CHOP (Children’s Hospital of Philadelphia) on Tues. to meet with their surgeon and a cardiologist.  I did some research and because Logan’s condition is so rare I thought contacting a bigger center than Ann Arbor would be worth it.  CHOP’s Cardiac intensive care unit is  has three times the number of beds and they have 50 cardiologists instead of MI’s 8.  I had also heard one Mother describe CS Mott’s Congenital Heart Center as very small,  gloomy, and depressing so I though maybe I should call around.  So far CHOP has been wonderful, very organized, friendly, and extremely accommodating.

6 thoughts on “Exciting News and Not So Exciting News.”

  1. Just wanted to tell you that my Jake has Heterotaxy,he also had malrotated intestines and the hernia. He had the surgery and came through it very well. It is best to go ahead and do it before it causes any other problems. I will keep you and your little one in my prayers. Heterotaxy heart hugs from one mom to another:)

      1. we actually spent his first 3 months of life in the hospital. he had open heart surgery when he was 1 day old then while we were still there several weeks later had the ladds done for his intestines and then had the surgery done for his g tube. but the ladds for his intestines was by far the easiest of the 3. i was told that if you wait to long that their intestines can die and that scared me so bad. i will keep you guys in my prayers. your little one is a trooper and he will get through this.

  2. It is great news that the pulse ox is becoming another part of newborn screening. It is one more step in getting all CHD’s caught before a baby leaves a hospital.

    Praying for you as you head to CHOP for Logan’s surgery!

  3. I can’t believe I’m just seeing this post. But if you can imagine, haven’t slept here in a while. You are AWESOME. Think of you and Logan most every day. And your efforts in pulling together the parent information on diagnosis were sooo helpful. That was all submitted to the committee that made the decision to recommend all babies in the US be screened for critical congenital heart disease before discharge. Proud to know you! Now will be watching for all the updates on your little one. I know you will make the right decisions, wherever you land. Peace and prayers, Annamarie

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