Kids With Heart NACHD


CHD Awareness Week-A Letter from Our President

February 7, 2019

Being involved in Congenital Heart Defect Awareness efforts since 1991, I can tell you that CHDs are much more known than they were when we started on this road. There was no such thing as an IEP for kids with chds, there was no such thing as special services for the heart kids, in school or sports or anything else. The first recognized Congenital Heart Defect Day was February 14, 1999(?)- pretty sure that was the day. It was a national proclamation effort that was started by a mom, Jean Imperati, and aided by a lot of different support groups, parents,and at that time, the few CHD organizations. Yes, it gets frustrating but seeing people like Jimmy Kimmel come out and talk about his child's chd just goes to show you how far we have come. Over the years, chd affected many famous celebrities but they never wanted anyone to know. The fact that it took Shaun White this long for him to come forward to talk about his heart defects should be an indication of progress. Not only that but the multitude of non-profits dedicated to congenital heart defects is now overwhelming as well as the advocacy work that is being done. Also, back in the 1990s and early 2000s, the American Heart Assn wanted nothing to do with congenital heart defects. I has been in the last 5-10 yrs that they have gotten involved at all with heart defect research. All of this has been accomplished by parents like you who got involved on a small scale to make a BIG DIFFERENCE! Remember, there is strength in numbers and to quote a favorite phrase: United we Stand, Divided we Fall!!! Please do not give up!!!! THANK YOU FOR ALL THAT YOU DO!!!! 
Michelle L. Michelle Rintamaki
President, Kids With Heart National Assn for Children’s Heart Disorders, Inc.
(mom to John, 31, tetralogy of fallot with pulmonary stenosis, surgery 1/31/1990, arrhythmias- 2003-2006; pulmonary valve replacement 8/2/2005 
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CONGENITAL HEART DEFECTS Awareness Day can be every day! Items available at

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Kids With Heart Ride for Awareness 2018

May 30, 2018

Kids With Heart is excited to announce the Second Annual Kids With Heart Ride for Awareness, being held July 28th in Green Bay!

The motorcycle ride will begin at Vandervest Harley Davidson in Green Bay at 1 pm, and will return to Vandervest around 5 pm. Registration will begin at noon, at there will be a hot dog stand, staffed by our very own volunteers, during registration. We would like to thank Festival Foods for their donation and support, as they are sponsoring the registration hot dog stand.

There will be an afterparty, open to nin riders too, including music by Cheef Moabi and The Band Eden; food from Thermal Chaos, and beer, including Badger State Brewing! There will also be raffles, which will be drawn same night.

We are also excited to announce that Razor Wisconsin (94.7 and 104.7) is supporting the ride this year!

Ride fees are $15 a driver, $5 a rider.
After party only entry will be $10.

Children under 10 will be free, as will any CHD Survivor!

Event Sponsors:

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Kids With Heart, Facebook, and Giving Tuesday

November 27, 2017

This Tuesday, November 28th, Facebook and the Bill and Melinda Gates Foundation are teaming up to match donations to non-profits world wide.  And with your help, Kids With Heart can be a part of this.  Any donations made to Kids With Heart after 8 AM on Tuesday, November 28th, will be matched dollar for dollar.  These donations are the primary source of funding for Kids With Heart.  A strictly volunteer ran non-profit, everything we do is done to help, to educate, to raise awareness, and to support.  Everything we do is funded by our supporters.  Supporters like you.  And for Tuesday, our supporters can include Facebook, and the Bill and Melinda Gates Foundation.  All they ask is for you to take the first step, and donate.  And they'll take it with you.  Congenital Heart Defects are the most common form of birth defect.  Sadly, they also account for up to 50 percent of childhood deaths caused by birth defects.  Kids With Heart aims to help prevent that, by educating parents, providing support and networking, and raising awareness worldwide.  An international support group, with over 3000 registered members.  There are no registration fees, and our support services cost members nothing.  But for us to continue to be able to help, we, too, need help.  We need support of our own.  And that's where you come in.  Click the link below to find our fundraiser, and Donate to support Kids With Heart.  It doesn't take much.  Facebook is a large place.  Donate a dollar.  Share it with friends and family.  Encourage them to do the same.

Support Kids With Heart Here This Giving Tuesday

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Kids With Heart Affiliations

November 25, 2017

Kids With Heart National Assn for Children's Heart Disorders, Inc. is an independent 501 C 3 organization on our own.It has come to our attention that there are other organizations that have been using the Kids With Heart name for support groups for families of kids with congenital heart defects. We are, in no way, affiliated with any other groups, nor have we given them permission to use our registered name. We are based out of Green Bay, WI, are international, but have no satellite branches.  Everything is handled through our central office.  If you have any questions or concerns, please feel free to contact me direct at or 1-800-538-5390. Thank you for your support!

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How Black Licorice Can Make Your Heart Jump

November 4, 2017

If your heart skips a beat every time you think about treating yourself to black licorice — it may know something you don’t.

If you eat too much of it, your heart actually may skip a beat or two, or even more.

Though it happens rarely, black licorice can cause an irregular heartbeat in some people, says the Food and Drug Administration, and an excess may even cause serious harm.

The troublemaking stuff in black licorice

“Black licorice contains a compound that comes from licorice root that can lower your potassium levels. Lower potassium levels can cause those abnormal heart arrhythmias,” says registered dietitian Kate Patton from Cleveland Clinic’s Section of Preventive Cardiology.

FDA experts say black licorice contains the compound glycyrrhizin, which is the sweetening compound derived from the licorice root.

The compound can cause potassium levels in the body to decrease. When this happens, some people experience abnormal heart rhythms.

Decreased potassium can be dangerous

Others, especially those over 40 who have a history of heart disease and/or high blood pressure, may experience other potentially serious problems including a rise in blood pressure, lethargy and even congestive heart failure.

“If you already have heart disease or high blood pressure, then be a little more aware of how you’re feeling if you eat this kind of licorice,” says Ms. Patton. “Stop eating it if you think you notice any type of irregular heartbeats.”

Ms. Patton adds, however, that foods that advertise themselves as “licorice” or “licorice flavor” use anise oil, not true black licorice. Those foods will not put you at risk for arrhythmias.

How much is too much?

So how much is too much? The FDA says eating multiple 2-ounce bags of black licorice a day for at least two weeks is overdoing it. (That’s a lot of licorice.)

Ms. Patton says the phenomenon is rare, but if you do feel funny after eating black licorice and you’ve had heart trouble in the past, don’t hesitate to call your doctor.

“If you have any concern I would definitely call your doctor’s office right away and let them know. If it’s really severe then definitely I would go to the emergency room. It’s better to be safe than sorry.”

The good news is if you do happen to eat too much and begin to feel sick, Ms. Patton says potassium levels are usually restored with no permanent health problems.

Original article can be found at: Cleveland Clinic

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Herma Heart Institute designation

October 6, 2017

In recognition of the Herma Heart Center’s outstanding clinical care and outcomes, advancements in the field of research and transformational philanthropic support, Children’s Hospital of Wisconsin is proud to introduce its new designation: the Herma Heart Institute — the first such clinical institute for Children's Hospital of Wisconsin.

A history of philanthropic support and partnership leads to world-class care

Children’s Hospital of Wisconsin recently completed an $8 million challenge from John and Susan Herma to benefit the Institute. The $16 million raised from the Herma Heart challenge since April 2017 will support research and clinical innovation, with a focus on eradicating congenital heart conditions and advancing medical care to improve the quality of life for heart patients and their families.

In total, the Herma family has donated more than $25 million over the past 30 years to Children’s Hospital of Wisconsin, helping to transform the cardiac program from a regional service line to an internationally recognized program pioneering advancements in surgical outcomes and clinical care.

The Herma family’s history of contributions include:

  • 1994: Gave $1 million to establish the Leigh Gabrielle Herma Endowed Chair, the first cardiac endowed chair at Children’s Hospital of Wisconsin.
  • 1996: Donated an additional ECMO (Extracorporeal Membrane Oxygenation) to Children’s Hospital of Wisconsin to meet high demand for this life-saving equipment.
  • 2000: Funded the development and staffing of the Wisconsin Pediatric Cardiac Registry, the first systemic collection and analysis of data of children born with congenital heart defects in the state of Wisconsin.
  • 2002: Gave $5 million to establish the Herma Heart Center, now designated the Herma Heart Institute.
  • 2007: Invested $10 million in advancing congenital heart research.

Innovation and inspiration drive Herma Heart Institute

Together we are on a mission to eradicate congenital heart disease

Despite the incredible advancements in survival for congenital heart disease (CHD), more can be done to improve the lives of children and families who are affected. Children’s Hospital of Wisconsin will continue to fundraise for the Herma Heart Institute with a new goal to raise an additional $11 million over the next five years. All gifts will advance research and clinical innovation for kids with congenital heart disease and defects. Individuals interested in supporting the Herma Heart Institute can visit or call the Children’s Hospital of Wisconsin Foundation at (414) 266-6100.

Internationally renowned heart care, right here in the heart of the Midwest

Families worldwide trust the Herma Heart Institute for compassionate, comprehensive and cutting-edge cardiac care for their children. With multiple clinic locations throughout the state of Wisconsin and hospitals located in Milwaukee and the Fox Valley, we provide the most advanced levels of care and follow-up for families, as conveniently as possible.

  • Children’s Hospital of Wisconsin is ranked #5 in U.S. News & World Report Best Hospitals for Pediatric Cardiology and Heart Surgery.
  • Our comprehensive heart care team includes more than 250 highly skilled staff and providers who specialize in pediatric cardiology and lead our many specialty programs.
  • Pediatric heart surgery survival rates at the Institute are among the country's best and have consistently earned us a 3-star rating — the highest possible – by the Society of Thoracic Surgeons.
  • Patient families rate their experience with the Herma Heart Institute 4.9 out of 5 stars.
  • We provide a lifetime of care, from before birth and into adulthood. Our Adult Congenital Heart Disease Program is accredited as a Center of Comprehensive Care by the Adult Congenital Heart Association, the only accredited program in the state and one of only 12 in the country.
  • We provide superior support for out-of-town families with coordination of travel, appointments and gathering of medical records through our Access Center.

Original article can be found on the Children's Hospital Website

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New device can monitor mitochondria in the heart to predict cardiac arrest

October 6, 2017

A new device can assess in real time whether the body's tissues are receiving enough oxygen and, placed on the heart, can predict cardiac arrest in critically ill heart patients, report researchers at Boston Children's Hospital and scientists from Cambridge device maker Pendar Technologies. Their study, conducted in animal models, is the cover article in today's issue of Science Translational Medicine.

"With current technologies, we cannot predict when a patient's heart will stop," says John Kheir, MD of Boston Children's Heart Center, who co-led the study. "We can examine heart function on the echocardiogram and measure blood pressure, but until the last second, the heart can compensate quite well for low oxygen conditions. Once cardiac arrest occurs, its consequences can be life-long, even when patients recover."

The device uses a technology called resonance Raman spectroscopy to measure whether enough oxygen is reaching the mitochondria, the organelles that provide cells with energy. In critically ill patients with compromised circulation or breathing, oxygen delivery is often impaired, making it hard for mitochondria to do their job. This is especially a problem for the heart, which has constant high energy needs.

The current standard for measuring tissue oxygenation, known as mixed venous saturation (SvO2), requires repeated blood draws, adding extra risk in critically ill patients. More importantly, SvO2 cannot tell whether oxygen supply is sufficient to meet the dynamic demands of heart muscle.

"We wanted to create an organ-specific, continuous, reliable readout of how adequately mitochondria are being fed oxygen," says Kheir. "This is the first demonstration of a device that can monitor mitochondria in living tissues to predict impending organ failure."

Using light to monitor mitochondria

This technology is the product of a collaboration between the Translational Research Lab in Boston Children's Heart Center, co-led by Kheir and Brian Polizzotti, PhD, and Pendar Technologies (Cambridge, Mass.). "At the bedside, we saw patients who had a limitation to coronary blood flow, and wanted a device that could provide an early warning sign," Kheir says.

The team created a metric they call 3RMR that uses light readings generated by resonance Raman spectroscopy to quantify oxygenation and mitochondrial function in real time.

When a cell's oxygen levels are too low, its energy balance changes. Electrons start to build up in certain cellular proteins -- hemoglobin, myoglobin and mitochondrial cytochromes. This energy shift reduces or shuts down mitochondrial energy production and can also trigger cell death. All of this sets the stage for organ injury or dysfunction and, in the worst case, cardiac arrest, says Kheir.

Resonance Raman spectroscopy quantifies the fraction of mitochondrial proteins with electrons on them based on how light is scattered when a laser is shined on them. Under low-oxygen conditions, the gain in electrons causes these molecules to distort and, as a result, their spectrum changes.

"This system tells us how satisfied the mitochondria are with their oxygen supply," Kheir explains.

The team used a precise laser and a complex algorithm to distill the information in real time.

"Distinguishing mitochondrial signals from other biological signals with accuracy and speed was the most significant scientific advance here," says Pendar CEO Daryoosh Vakhshoori, PhD, who oversaw the engineering aspect of the project.

Predicting cardiac arrest

Joshua Salvin, MD, MPH and Dorothy Perry, MBChB of the Heart Center, the study's co-first authors, tested the device in rat models. They found that reduced oxygenation of the heart corresponded with elevations in 3RMR, regardless of the cause of reduced oxygen delivery. Elevations of more than 40 percent, measured after 10 minutes of low-oxygen conditions, predicted reduced heart contractility and subsequent cardiac arrest with 97 percent specificity and 100 percent sensitivity, outperforming all other measurement techniques.

The team further tested the device during simulated congenital heart surgery in a pig model. They were able to measure how satisfied the heart muscle was with its oxygen supply, something that cannot currently be done.

"Our likely first application of this device will be to monitor oxygen delivery during and after heart surgery," says Kheir. The current probe is the size of a pen, but eventually, the team would like to develop a smaller probe that could be left inside the chest, so patients could be monitored in the ICU during highest-risk times.

Future applications

Kheir and colleagues also believe the technology could be used to monitor tissue viability in other operations in which tissues and organs are exposed. Potential applications might include monitoring organs intended for transplantation and detection of dangerously reduced blood flow in limbs.

"I think there would be many surgical uses," says Vakhshoori, co-corresponding author on the study. "There really is no technology currently that can assess, in real time, whether oxygen delivery to a tissue is adequate at the level of the mitochondrion."

Kheir also thinks the tool could be helpful in cancer research, since mitochondrial function is central to cancer biology.

The team's goal is to seek FDA approval and commercialize a bedside monitor of mitochondrial oxygenation. In the meantime, Kheir and colleagues plan to seek approval to test the device to monitor heart patients.

Originally posted by News Medical Life Sciences, from Boston Children's Hospital

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Kids With Heart Ride for Awareness

July 10, 2017

We're excited to announce the first ever Kids With Heart Ride for Awareness! Brought to you by VanderVest Harley Davidson, Y100 radio, Scoreboards of Green Bay and Jimmy Seas. We'll be riding out from Scoreboards at noon on August 19th. Further details, exact route information, and a more detailed list of sponsors and raffle prizes will be announced in the coming weeks, but the route will head west to Shiocton and Angelica before circling back to Green Bay and ending at Jimmy Seas. Even if you don't ride, come join us for the after party.  There will be raffle prizes, a live broadcast by Y100, food and drinks, and plenty of music.  Come out to see the bikes and support Kids With Heart locally.  Pre-registration is available through our store as well.

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Heart Defect Awareness-Not Just February 14th

January 11, 2017

Just a reminder to everyone to please make every day Congenital Heart Defect Awareness Day! Check out our pins, magnets, and bears in the Awareness section of our store.  Heart Defect Awareness Day is officially February 14th.  But for those who are touched by it, we're aware of CHDs every day.

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Thank You to Our Supporters

December 31, 2015

As 2015 comes to a close, we would like to thank those who have made donations including matching gifts with their employers (especially my co-worker and our employer- Georgina Leanna and The Home Depot, Hu- Hot, special individuals, and the donation received from being nominated by an anonymous angel for a donation through the Charles Schwab Charitable Foundation. All of your donations enable us to continue to help families at no charge. Thank you again.

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