1in100

Oh my.  Just got this today – we understand the newsletter also goes to pediatricians and cardiologist around the country.  So proud of our little Eve.  She has done some wonderful things in her short time here…thank you University of Minnesota Amplatz Children’s, Mayo Health System, Children’s Hospitals, Regions Hospital and Minnesota Department of Health [...]

The Internet Encyclopedia of Science has gathered what may be the most compact, yet comprehensive chunk of helpful info on congenital heart defects ever assembled.  It’s easy to read, easy to understand and provides a launching pad for those new to pediatric heart disease.  Know more.  Do more.
congenital heart defects
A congenital heart defect is a [...]

So happy the Journal of Neonatology picked this article up in June.  It is thorough.  It is clear.  And it’s preaching to the choir at 1in100…
Thank you Dr. Hoffman and colleagues for your research and valuable opinions on this topic.

This gorgeous little girl is Taryn Kennedy.  She was happy, healthy, growing until almost one month old.  Her parents didn’t see it coming, and she was lost to an undiagnosed heart defect – TAPVR – at 29 days old.  I stood next to her mom, Vi Kennedy (blessherheart.org), just two weeks ago at [...]

Here’s my attempt to summarize the events from the Secretary’s Advisory Committee on Heritable Disorders in Newborns & Children (ACHDNC) on Friday in Washington DC.  I hadn’t slept in 3 days, and my brain was working overtime – but I can say that the preliminary report and the comments from those in attendance were very [...]

In this first year of Eve’s life, we have come to this epiphany.  In our daughter’s cardiologist, we found medical nirvana.  He has been smart, savvy, pigheaded (as needed), caring, proactive, collaborative.  Many days, we would see this man at 7 am – and again at 7 pm.  If we emailed or called or paged [...]

We knew our baby’s heart would be stopped while the surgical team at Children’s Hospital Boston repaired it.  It’s a damn freaky thing.  If your heart isn’t beating, you are…well, dead.  Right?
It occurred to me that we – the families of pediatric heart patients – are rather unique in having experienced this with our kids.  [...]

For those following the pulse oximetry newborn screening bill in Nebraska, information is in the article below.  I spoke to Senator’s office last week to see where are at.  In a nutshell.  First, let me say I believe this legislation was introduced in Nebraska with all the best intentions.  I commend the Klein family for [...]

Before we had Eve, I thought I knew about giving.   Paul and I have been fortunate enough to be involved with a number of wonderful people and organizations over the years.   We’ve been inspired to give more through Smile Network International (smilenetwork.org), Children’s HeartLink (childrensheartlink.org), Adopt A Room (adoptaroom.org), Artspace (artspace.org) and others.
But in my [...]

Hopefully Nike won’t mind if we borrow their tag line for a bit.
So many of us want to do something, anything, to move things along with newborn screening for heart defects.  There is a whole lot of really amazing work being done – by individuals, organizations, policy officials, and medical professionals.  But what about grassroots [...]