SPCN News!

This page will serve to provide the latest on news relevant to SPCN members. We will also broadcast some information via social media and email to ensure all have exposure to this information.

Contributions to this come from SPCN members. These contributions will include scientific information on congenital heart disease, including, but not limited to, patient care, management, outcomes, and quality indicators in all arenas. Bulletin articles may be research abstracts, summaries of conference presentations, updated information on quality initiatives, and collaborative practice information from member surveys. Members may submit contributions for this to the SPCN email address at trudy-pierick@uiowa.edu. Submissions will be reviewed by the website coordinator/newsletter editor, the SPCN President and one of our Founding Members. Contributions will be “published” bi-monthly and linked to the SPCN News by listing year.

Melissa Cousino, PhD, Division of Pediatric Psychology, Michigan Medicine | March 2020


SPCN members, we hope you’re surviving the current upheaval of our world as safely as possible.  Many of us are receiving so many questions from patients and families about this infectious disease. We wanted to send you a document that provides some tips that can be given to families to help them discuss the current issues with their children.  The advice of psychologist, Melissa Cousino, is here to help you advise families when talking about the pandemic.

If you have strategies or publications that you’d like to share with SPCN about the current COVID-19 situation, please email them to gfosse@med.umich.edu.  Depending on what is received and how things evolve, SPCN will consider distributing more information to our membership.



Your care team understands that this is an especially stressful time for our patients and families. Below are some common questions and helpful tips for supporting our patients during the COVID-19 outbreak.

Should I talk with my child/teen about COVID-19? Tips for doing this?

Although parents and caregivers understandably try to protect young people from scary realities, not addressing the situation could heighten fears. Some quick tips:
  1. Inform yourself first. You can find information in a variety of sites – please use sites recommended by your healthcare team or a recognized organization that reliably provides updated information like www.cdc.gov and achaheart.org/webinars.
  2. Use developmentally appropriate, simple and honest language.
  3. Provide reasonable reassurance and explain what is being done to keep them as safe as possible, like good hand washing, staying home much more, and many people working very hard to stop, treat, and cure the virus.
  4. Follow their lead and validate their feelings. If they don’t want to talk about it, you should stop and check in another time. It is understandable to feel sad, worried, angry, or even happy with the changes happening.
  5. Bring opportunities for control and fun where you can.
  6. Model healthy coping and take time to address your own feelings.

What if they ask about their health condition or medical care?

Again, we recommend simple, honest responses. We are still learning about COVID-19 and health conditions. It may be helpful to remind them that being careful about germs/infection and taking extra precautions are things your family has been practicing for some time. It is appropriate to assure them that while appointments may change or happen in new ways, their care team is committed to making sure they still get the best care while reducing unnecessary risks.

My child/teen keeps asking why is everything being cancelled? Is “social distancing” really necessary?

It is important to explain to young people that “social distancing” (staying away from friends, school, crowds, etc.) is necessary for slowing the spread of disease and keeping our loved ones and healthcare workers safer. We encourage all to stay connected virtually. Young people are especially skilled at doing this. They can be encouraged to video call a friend to do an activity or school assignment together, watch a movie with extended family through online hangout sites, or take virtual field trips with classmates. Monitoring social media safety remains important.
These feelings are very normal and understandable in all of us, but may be greater for some young people with health conditions. The hospital social media pages will continue to feature helpful resources. Here are some quick tips:
  1. Validate or give “names” to feelings, but do not dwell on things too much.
  2. Help your child to find positive, distracting activities when negative feelings take over.
  3. Encourage use of relaxation strategies, like deep breathing and mindfulness exercises.
  4. Engage in healthy routines. Limit news/media exposure. Develop daily schedules together.
  5. Together as a family, think of something good that happened each day.
  6. Challenge those negative thoughts! Is this thought true? Is it helpful? Is there a more helpful thought I can focus on? Positive self-statements, focusing on one’s resilience and strengths, can be especially helpful.

Posted: January 16, 2020


The Centers for Medicare & Medicaid Services (CMS) is seeking additional input and recommendations regarding elimination of specific Medicare regulations that require more stringent supervision than existing state scope of practice laws, or that limit health professionals from practicing at the top of their license.

Click to Read Complete Press Release: CMS

ACHA ACHD Accreditation Found to Improve

Patient Survival While Waiting for Heart Transplant

Posted Tuesday, Jan 07, 2020

ACHA ACHD Program Accreditation continues to develop and grow with 34 fully accredited programs and several more initiating and completing the process. Programs of all sizes—with widespread geographic locations and various care models—have met the criteria to become fully accredited. The ACHA Accreditation Program was designed and developed by providers and patients to meet the needs of the ACHD patient population and improve the quality of care delivered throughout the United States.

Recently, an exciting article was published (click here for abstract) by the Journal of the American College of Cardiology (JACC) and is the first data-driven article to further signify the importance of ACHA ACHD Program Accreditation to patient care.

In the article entitled “Improved Outcomes of Heart Transplantation in Adults with Congenital Heart Disease Receiving Regionalized Care,” VP Nguyen and colleagues from the University of Washington in Seattle describe factors leading to improved pre- and post-heart transplant mortality.

The authors studied ACHD heart transplantation listed through UNOS (United Network for Organ Sharing) from 2000-2018. They found 1,746 patients were listed for a heart transplant and 1,006 were transplanted. They looked at several factors related to waitlist (pre-transplant on the waiting list) and post-transplant mortality.

The most powerful factor predicting the lowest pre-transplant mortality was being listed at an ACHA ACHD Accredited site. This was more powerful than a center’s overall transplant volume or high volume vs low volume heart transplant center. 

This result would indicate it is the comprehensive, expert ACHD care the patient receives at an ACHA ACHD Accredited site that improves survival waiting for a heart transplant.

We are confident that in the coming years, data-driven initiatives and studies will show further evidence of the importance of ACHA ACHD Accreditation to patient care. We also plan to extend the care model to local care and develop a network within ACHA Accreditation to improve access to high-quality ACHD care.


May 2018 SPCN Bulletin

The SPCN Bulletin for May contains Highlights of the SPCN Educational Program – 2018 This year was the first year of the Annual Nancy Koster Memorial Lecture. (attached file)

Nancy was instrumental in the developmental years of SPCN, serving on the Board in many roles, including President. Nancy’s passion was providing education to everyone on CHD – patients, parents, nurses, community members! SPCN initiated this lecture on any topic that provides cardiac education after her untimely death in 2017.