Critical Congenital Heart Disease: Where We Are & Where We're Going

Critical Congenital Heart Disease: Where We Are & Where We're Going

Public Square #04Published March 29, 2017
The Prompt: 

In February 2017, Baby's First Test and Children's National Medical Center hosted an educational webinar about critical congenital heart disease (CCHD), which affects thousands of babies in the United States each year. The webinar's speakers included Lisa (Hom) Wandler, RN, Esq. from Children's National Heart Institute and Erin Palmer from the 2016 Consumer Task Force on Newborn Screening. Lisa Wandler discussed the evolving science and policies around CCHD since it was added to the Recommended Uniform Screening Panel (RUSP) in 2011. Erin Palmer shared her family's experience with CCHD and her current project as a Consumer Task Force member.

You may watch the full webinar here.

During this webinar, Lisa Wandler discussed educational priorities for CCHD, including reaching underserved populations and educating pediatritians and obstetricians on the latest research and best practices around CCHD screening. Erin Palmer also discussed the importance of education and follow-up around CCHD among midwives.

In your experience, what do you see as educational needs for CCHD screening and follow-up?

5 comments
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The Question: 
In your experience, what do you see as educational needs for CCHD screening and follow-up?
The Question: 
In your experience, what do you see as educational needs for CCHD screening and follow-up?
ModeratorMarch 30, 2017
FLAG
Natasha Bonhomme Project Director/ Co-Principal Investigator at Baby's First Test

Hello Everyone and welcome to the Newborn Screening Public Square. I am the Director of Baby’s First Test and will be the moderator for this public square event. In the past few years we have seen the number of states screening for CCHD grow exponentially. The webinar goes over this expansion of screening as well as a family story that highlights the importance of CCHD screening. We are excited to hear from you about your experiences with screening for CCHD and your thoughts on the educational needs for families and health providers.

FLAG
Amy Gaviglio 1

This was a wonderful webinar! Thanks Lisa and Erin for sharing! In Minnesota, we have seen several educational needs that really span the CCHD process. First, is the training and education needed for birth hospital staff and midwives to ensure that they are properly following the recommended screening protocol and that no eligible baby is missed. For midwives, in particular, we've needed to discuss special strategies for screening to help it fit into their current visit practices.

After screening, it's important to make sure that parents of babies who've passed understand the limitations of the screen and that certain types of defects might be missed (like Coarctations).

For those parents of children found to have a defect (regardless of how they were picked up), it is so important for the support systems to be set-up like Erin described.

In the world of newborn screening, CCHD screening is quite unique; which makes education and training especially important!

FLAG
Ruth Caruthers

I believe that more focus needs to be put into sonographers and the protocol being used in each hospital. We have achieved a great start to post birth care of CCHD, but I have not seen any conversation about targeting the people who's job it is to catch heart defects in the first place: your ultrasound technician. I know that not all can be seen on ultrasound, in fact, it's harder than it sounds, but there many areas in which we can improve. That is where I would like to focus my work on now that I am a sonographer!

ModeratorMay 05, 2017
FLAG
Natasha Bonhomme Project Director/ Co-Principal Investigator at Baby's First Test

Thank you so much for your comments Amy and Ruth. And congrats Ruth on now being a sonographer! What a great way to get a full understanding of where education and training efforts can be made. I agree with you both in that while so much great work has been done in getting CCHD screening implemented across the country, our next step is to work towards consistency in testing and treatment for all babies affected. This is especially important since CCHD screening happens in so many different settings meaning room for misinterpretation and variance in protocols. I wonder if there are any other efforts or initiatives out there trying to build consistency and bring together hospital staff, midwives, sonographers, and others to learn the best approach to screening.

FLAG
Lily Fountain

We need to keep the positive framing for CCHD, so that parents don't reject the information out-of-hand. We need to educate providers that the main message is NOT that they need to know about 55 disorders, but they just need to educate about the why and how of newborn screening.

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