Our heart community took some major hits this week…we lost some very, very precious babies here on earth. But the angels in heaven gained some new playmates. I think many of us take the greatest solace in the messages from those parents who have already experienced loss. Levi Beers (Aiden’s dad) never fails to put the faith back in one’s soul. http://mysonisanangel.wordpress.com/ I am grateful for his counsel and friendship.
And there are so many more…Cora’s mom, Kaia’s mom, James’ mom, Allie’s mom…
Despite their still-fresh grief, they reach out to CHD families and GIVE. I saw a post from Stephanie, Kaia’s mom, that said she would be sure to have Kaia look for Hazel and Pierce in heaven…show them around, ya know. Just that visual image provided such comfort and peace. I have yet to see anything more tragic than a coffin the size of a shoe box. It’s wrong in every way. But hearing the hope directly from these parents…that is pure light.
And in the middle of all the darkness this week – there has actually been a good deal of light.
There were two things that I started working on last summer – after Eve’s surgery. Newborn screening for heart defects. And pediatric heart devices for surgeons.
Those two things became the cornerstone priorities of 1in100. There is clearly so much to do in the wide world of CHD. But for the moment, these were the things I truly thought weren’t getting enough traction. And that I might have some of the tools to tackle.
So this week – strangely enough, BOTH of these priorities saw major breakthroughs.
1in100 Priority 1 – Newborn Screening/Early Detection
This coming week, for the first time in memory, there will be an official report on the agenda at the national Newborn Screening Advisory Committee meeting in Washington DC. It will be presented by the Mayo Clinic doctor that is on the Minnesota committee and that has been advising on our pulse ox pilot study here. I will be providing comments at this meeting – and the next step is to submit the formal nomination to make universal screening for CHD at “standard of care” for all newborns. Anticipating this will happen as soon as February.
On a related note, there are at least two CHD screening bills at the state level that have been introduced in recent weeks. Cora’s Law and Chloe’s Law are both making headway. Kudos to Kristine http://instructionsarenotincluded.blogspot.com/ and Kelly http://chdbabies.blogspot.com/ for their passion and drive.
1in100 Priority 2 – Pediatric Heart Devices
Six months ago I made the rounds with heart device companies to find out why it’s so damn hard to get pediatric size devices into the hands of surgeons operating on tiny hearts. Some reasons? FDA restrictions, small market, too much R&D, too long…been keeping at it regardless, even provided testimony at an FDA workshop in the fall. Fast forward: Email from a major heart valve company. As of this week, they are working to develop a pediatric heart valve!! Everyone (FDA, Industry and Physicians) have now made commitments to the speedy clinical study and introduction of pediatric valves with proven safety to the market.
Stunned and grateful. I could have never imagined so many good people would mobilize, so quickly, to move these initiatives forward in such a meaningful way.