Angela Curry, Chief Compliance Officer at Bentley Systems, to lead 2023-2024 Philadelphia STEM GOES RED Initiative

Community leader inspires young women in Philadelphia public schools to uncover their potential through STEM Goes Red movement with support from local communities, employers, and schools.

 The American Heart Association, the world’s leading nonprofit organization devoted to a world of healthier lives for all, announces Angela Curry, Vice President and Chief Compliance Officer, Bentley Systems, as the volunteer chair of the 2023-2024 Philadelphia area STEM Goes Red movement. STEM Goes Red is working to engage more women in STEM through the Association’s strong legacy of science, education, and discovery to help propel young women into rewarding STEM careers.

STEM Goes Red brings interesting careers in science, technology, engineering, and mathematics to life for young women. By giving students access to leading employers and experts, they have the chance for an insider look at what they do. STEM Goes Red attendees gain firsthand experience, connect with inspiring professionals, and learn about careers across STEM fields. Students can walk away feeling like a whole new world of STEM has been revealed — a world in which they can truly love what they do and make a tremendous impact.

“As the Chair of STEM Goes Red and a proud parent of students attending Philadelphia public schools, I am passionate and invested in our school district and in our next generation of STEM leaders,” said Curry. “STEM Goes Red is an exceptional initiative that provides mentorship and exposure to STEM careers so that girls can talk to women in STEM and see their future selves in companies like Bentley. Students have direct and meaningful interactions with inspiring women in STEM fields, and what they come out with is a dream and a blueprint for real pathways to careers in STEM.”

“We are thrilled to have Angela’s experience, conviction, and passion to lead our Philadelphia STEM Goes Red campaign to new heights. Together, we know that we will have a positive impact on the lives of young women in our Philadelphia community. Our collective goal is for these young women to become our next cardiologists, researchers, and scientists who can help end heart disease,” said Jennifer Litchman-Green, Executive Director, American Heart Association, Philadelphia.

This year’s STEM Goes Red movement will culminate with a hands-on event for female students with an interest in STEM in grades 9th – 12th in early November, sponsored by Bentley Systems.

For more information about Go Red for Women contact: Allison Snavely @ allison.snavely@heart.org

Damar Hamlin’s Inspiring Recovery: CPR Saves Lives 

While playing in the Buffalo Bills – Cincinnati Bengals game on Monday Night Football on January 2, Bills player Damar Hamlin suffered cardiac arrest after a hit and was administered CPR on the field before being transferred to an area hospital.

Hamlin reportedly experienced a cardiac arrest – when the heart stops abruptly with little or no warning. Early recognition of cardiac arrest improves the person’s chance of survival and is key to starting the correct care of CPR and the appropriate use of defibrillation to restart the heart. The on-site medical team evaluated the situation and appeared to quickly remove his safety pads, begin CPR and apply the automated external defibrillator (AED).  

CPR can help keep the heart pumping and blood flowing to vital organs until an electrical shock from a defibrillator is available to restore the heart to a normal heart rhythm. Then the patient can be safely moved for further medical treatment, supportive care, testing to determine what the cause of the arrest may have been and recovery, including both physical and mental health resources for the person and their family.

Possible causes

Cardiac arrest can have several causes. Since Hamlin collapsed immediately following a tackle on the play, one potential cause could be commotio cordis. Commotio cordis is a rare phenomenon from a sudden blunt impact to the chest causing sudden death in the absence of apparent cardiac damage. The blow to the chest at precisely the wrong time in the cardiac cycle causes an electrical abnormality in the heart resulting in  an irregular heart rhythm that cannot pump blood to the body.  Immediate CPR and a shock to reset the rhythm can help the heartbeat return to normal function.

Another cause of cardiac arrest that additional tests are likely to attempt to detect or rule out is hypertrophic cardiomyopathy (HCM) or a thickened heart muscle – a more common cause of sudden cardiac death in young people and athletes specifically. The thickened heart can be due to a genetic condition or can be caused by athletic conditioning that thickens the muscles of the heart and can make it more susceptible to an irregular heart rhythm like ventricular fibrillation/tachycardia.

“This was traumatic for everyone, especially Hamlin’s family and teammates but also for so many others involved and witnessing the event. More than 70% of cardiac arrests that do not happen in the hospital, occur in a home where access to medical professionals and an AED is not as readily available,” said Mariell Jessup, M.D., FAHA, chief science and medical officer of the American Heart Association. “Recognizing a cardiac arrest, calling 911 immediately, performing CPR and using an AED as soon as it is available are critical for survival.

Statistically speaking, it is likely that the person will need to be helped by a family member or a friend to survive.”

Having community members trained in CPR and AEDs in public spaces can increase the chances of survival. The rate of bystander CPR in North America is estimated at only 39-44%, and only about 1 in 10 people survive an out-of-hospital cardiac arrest. Improving the rate of bystander CPR is critical to increasing survival from out-of-hospital cardiac arrest (OHCA).

The skill to perform CPR and use a defibrillator are the foundational components of preparing laypeople to respond to cardiac arrest. People also need to feel emotionally prepared to respond and be able to cope with the aftermath of performing CPR.

Resources for learning CPR

Each year in the United States, an estimated 350,000 people experience sudden cardiac arrest in the community. Anyone who witnesses a cardiac arrest in the community (i.e., not in a hospital) can perform CPR. Roughly 70% of cardiac arrests that do not happen in the hospital, occur in homes and private residences, therefore, a friend or family member is mostly likely to be the person who needs to take action. CPR, especially if performed immediately, can double, or triple a cardiac arrest victim’s chance of survival.

For adults and adolescent children, Hands-Only CPR is an easy-to-learn skill that requires only two steps: call emergency services and push hard and fast in the center of the chest at a rate of 100-120 beats per minute.

For more information, visit heart.org

 

Eating for Heart Health

There are a lot of things we can do to improve our health. Eating a heart healthy diet is one of them. Bayhealth Primary Care Physician, Preeti Gupta, MD, explains, “Maintaining a healthy way of eating can help prevent many ailments, including heart health issues. And I always say, prevention is better than a cure.”

One of the best ways to eat for heart health is with a plant-based diet. It’s a healthy way of eating that won’t have you sacrificing flavor. Better yet, countless studies suggest that eating less meat decreases the risk of heart attack, high blood pressure and high cholesterol.

Here are Dr. Gupta’s suggestions to transitioning to a plant-based way of eating.

Plant-based eating
There are three main types of plant-based eating. The strictest is vegan, which eliminates all animal products such as meat, eggs and milk. Next, is vegetarian, which eliminates meat but still allows eggs and dairy products. Both are very heart healthy ways of eating but if they are too much of a leap for you, perhaps you could try the third type of plant-based eating called, “plant-forward” eating.

The plant-forward lifestyle
Eating a plant-forward diet means that you eat vegetables and fruit more often and as your main dish. You can still enjoy meat, eggs and dairy as side items. When you do choose meat, try to stick with lean, skinless poultry and fish, which are excellent sources of protein. Other meats are more likely to be high in cholesterol and saturated fat, which can contribute to poor heart health. You should also avoid processed meats such as deli meats and bacon, which are typically high in sodium.

Load up on veggies
In plant-forward eating, vegetables are the main portion of each meal. Did you know that most vegetables contain protein? Broccoli, spinach, Brussels sprouts, asparagus, corn, potatoes and peppers are some that provide needed protein. Beans are another source that can add flavor and texture to your meals. Also, have healthy fruit servings throughout the day which will help satisfy the sweet cravings.

Whichever plant-based eating plan you try, remember to choose foods lower in sodium and avoid added sugars, saturated fats, and especially hydrogenated oils, which contain trans-fat. Watch portion sizes and use nonstick cooking sprays rather than added fats when cooking. Don’t forget healthy whole grains such as whole wheat bread and brown rice.

Eliminating certain foods may be easier than you think. Once you begin a plant-based diet, your body will start reaping the benefits almost immediately – and you’ll feel better in general. “Don’t put off living your healthiest life by waiting until Monday to start your nutrition plan,” said Dr. Gupta. “You can do this. Just start now.”

 

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Greater Washington Executives and Companies Make Bold Commitments to Heart and Brain Health

On the ninety-eighth anniversary of the founding of the American Heart Association, Greater Washington Region leaders are making bold commitments to stand with the Association as it drives toward its 2024 Impact Goal which is focused on improving cardiovascular health for all while identifying and removing barriers to health care access and quality.  

 “As champions for health equity, the American Heart Association believes that everyone everywhere deserves the opportunity to live a full and healthy life” said Owen Billman, chair of the Greater Washington Region Board of Directors and president of Blake Real Estate “Although we have made tremendous progress in fighting heart disease and stroke in our community, our work is far from complete. The American Heart Association Founders Day provides a great reminder that we must continue the fight so every single person in our community has access to the resources they need to be healthy.” 

The American Heart Association, the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke, was founded in 1924 by six cardiologists, and the distinguished achievements of the organization over nearly one hundred years are the result of the passion of more than 40 million volunteers, supporters and employees who together have raised – and funded — more than $4.8 billion in research 

For nearly a century, the American Heart Association has saved and improved lives, pioneered scientific discovery and advocated for healthy public policies in communities across the country. These bold moves have helped transform the nation’s overall health and significantly reduce heart disease and stroke death rates. 

Reaching for bold goals is made possible because of like-minded leaders who share in the vision of better health for Greater Washington. Leading supporters of the American Heart Association in the Greater Washington Region include: The Bender Foundation; Harrity & Harrity, LLP; The J. Willard and Alice S. Marriott Charitable Fund, a fund of the American Endowment Foundation, Johns Hopkins Medicine, Linda Gooden & Laird Lott, Kaiser Permanente, SAIC, and Sheehy Auto Stores 

Another bold commitment made by local leaders is the commitment to serve as chair for Greater Washington Region signature events through 2024. These seven chairpersons have demonstrated the leadership needed to catapult the American Heart Association into achieving their 2024 Impact Goal, signing on to chair future campaigns:   

  • Cynthia Cifuentes, Vice President of Brand, Communications and Community Engagement at Kaiser Permanente, and Dr. Ameya Kulkarni, an interventional cardiologist and the lead for cardiology and cardiovascular surgery at Kaiser Permanente, serving as 2022 Heart Challenge Co-Chairs 
  • Deb Wells and Kara Walsh of the Women’s Board of the American Heart Association serving as 2023 An Affair of the Heart Luncheon & Fashion Show Co-Chairs
  • John Harrity, Partner of Harrity & Harrity and David Jaffe, Associate Dean of Student Affairs at American University Washington College of Law, serving as 2023 Lawyers Have Heart 10K Race, 5K Run, and Fun Walk Co-Chairs  
  • Sanjay Sardar, Senior Vice President at SAIC, and Vishal Tulsian, Senior Vice President at SAIC serving as 2023 Heart Ball Co-Chairs 

 ”We are just getting started on the next chapter of our relentless work to end heart disease and stroke,” said Vishal Tulsian, Senior Vice President of SAIC.  “We know that we can’t achieve our monumental goals alone and are grateful to the Greater Washington community for the passion and commitment they give to support the mission of the American Heart Association.” 

Driving to achieve the 2024 Impact Goal, the American Heart Association will continue to lead breakthroughs in science and technology, improve health care and advocate for federal, state and local policies drive healthier lifestyles.  

To learn more about the American Heart Association visit, heart.org/FoundersDay or contact elizabeth.treble@heart.org for more information. 

The American Heart Association and Johns Hopkins Medicine – National Capital Region Call on Women across the Greater Washington Region to ‘Reclaim Your Rhythm’ for Heart Month and Beyond

The American Heart Association, the leading global volunteer organization dedicated to fighting heart disease and stroke, is proud to announce that Johns Hopkins Medicine – National Capital Region (JHM-NCR) is the Live Fierce Go Red sponsor for the Greater Washington Region. JHM-NCR will focus on women’s physical and mental health around the Go Red for Women campaign that will educate the community through multiple public awareness campaigns and online educational experiences.

“When it comes to women, particularly women of color and younger women, we continue to see disparities around the recognition of symptoms, treatment of chronic stress and more,” said Jessica Melton, president and chief operating officer of Suburban Hospital, part of JHM-NCR. “Women have unique needs and risks factors when it comes to heart health. Our physicians and care teams are focused on raising awareness and bringing their expertise to support the health and well-being of women across our region.”

The campaign launches with a call for women to “Reclaim Your Rhythm” starting on Friday, February 4, as a part of the Association’s Go Red for Women National Wear Red Day.

“Go Red for Women and JHM-NCR will help women by promoting opportunities to build healthy habits and learn from

leading experts throughout the year,” said Soula Antoniou, executive director of the American Heart Association. “We’re thankful for the ongoing commitment of Johns Hopkins Medicine to improve women’s lives.”

Experts say the effects of COVID-19 are likely to influence cardiovascular health and mortality rates for many years[1], directly and indirectly, physically and emotionally.

“Now’s the time for women everywhere to prioritize their health and well-being and ‘reclaim the rhythm’ that allows them to

flourish,” said Carolyn Carpenter, president of Johns Hopkins Health System for the National Capital Region. “We recognize that fulfilling our mission of improving the health of our communities requires that we increase our support to the women who form its foundation. Our plan is to do just that through expanding access to services, disseminating new knowledge and bringing additional clinical expertise to the women of the NCR.”

5 Ways YOU Can Reclaim Your Rhythm:

Mellow Out and Reduce Stress
Stress leads to unhealthy habits like overeating, physical inactivity, smoking and risk factors for heart disease and stroke like high blood pressure, depression or anxiety.

Move to the Music
Physical activity is linked to lower risk of diseases, stronger bones and muscles, improved mental health and cognitive function, and lower risk of depression.

Feed Your Soul, Rock Your Recipes
Eat meals together as a family for a chance to connect and decompress. Regular meals at home with family reduce stress, boost self-esteem and make the whole family feel connected.

Stay on Beat with Blood Pressure
High blood pressure is a leading cause and controllable risk factor for heart disease and stroke and can contribute to worse outcomes for people who contract COVID-19.

Keep the Beat! Learn Hands-Only CPR
When a person has a cardiac arrest, survival depends on immediately receiving CPR from someone nearby. Help your community reclaim their rhythm by learning the two simple steps of Hands-Only CPR: Call 911, then press hard and fast in the center of the chest.

Join the conversation on social media by using #GoRedDC, #HeartMonth and #WearRedDay. The American Heart Association’s Go Red for Women® movement is nationally sponsored by CVS Health and locally sponsored by Johns Hopkins Medicine. Learn more about upcoming events and download health resources at www.DCGoRed.Heart.org.

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[1]   https://newsroom.heart.org/news/heart-disease

Ready. Set. Go! Registration Opens for the 32nd Lawyers Have Heart 10k, 5K, and Fun Walk!

Lawyers Have Heart brings together runners and walkers — of all ages, levels of experience — to raise funds for the American Heart Association (AHA) and increase awareness of heart attack and stroke prevention. In 2022, the Lawyers Have Heart 10K, 5K and Fun Walk will be back in-person in Washington, DC on June 11 to reinvigorate heart-healthy lifestyles by uniting the community around better health and well-being, a fun experience and opportunity to help save lives. This year will also offer a virtual option to run or walk wherever inspiration strikes.

Stepping up again are previous Co-Chairs Harrity & Harrity LLP’s Co-Founder John Harrity and American University Washington College of Law’s Associate Dean of Student Affairs, David Jaffe.

Lawyers Have Heart Co-Chair, John Harrity

“No matter where you choose to walk, participating and donating to Lawyers Have Heart will save lives and improve lives.” said Harrity. “As a survivor of a widow-maker heart attack, this race is truly personal to me. I am here today because of the science funded by the AHA. It’s my mission to share this event with as many people as possible. So many lives depend on it!”

For Jaffe, the event serves as a platform for mental health awareness and stress reduction in the legal profession. Research shows that chronic stressors like long work

Lawyers Have Heart Co-Chair, David Jaffe

hours, financial stress, and work-life conflict may be as risky for health as secondhand smoke. “Chronic stress does not have to be the norm, and according to the AHA, reducing stress and cultivating a positive mindset can improve health and well-being. Being a part of the Lawyers Have Heart campaign allows many to set personal goals to begin their positive health journey,” said Jaffe.

Courtesy of platform sponsor Harry & Harrity LLP, between December 1 – 31 sponsorships, donations, and registration fees will be matched for up to $50,000. “That’s doubling the impact your dollar has,” added Harrity.

Lawyers Have Heart began in 1991 as a running and walking event for the legal community and has evolved into a staple on DC’s running calendar attracting runners and walkers of all levels of experience and from all walks of life. This event annually attracts over 6,500 runners and walkers to participate in a 10K or 5K course through neighborhoods in DC. Due to the pandemic, the last two years have been fully virtual with participants running and walking in support of the AHA from around the world – United States, England, Croatia, Spain, South Africa, Japan, Turkey, Chile, and more. To date, Lawyers Have Heart has raised over $17 million to benefit the American Heart Association to further its mission of being a relentless force for a world of longer, healthier lives.

The 2019 Lawyers Have Heart Start Line

“We can’t wait to come together in person this year with the beloved race experience we’ve all missed,” said Jaffe. “We also are excited to continue to grow this race and field runners and walkers from around the world.”

Registration opens on December 1 with virtual and in-person options and prices to enter will increase in 2022. Sign up as a team or individual at www.LawyersHaveHeartDC.org. For sponsorship opportunities email ESLawyersHaveHeart@heart.org.  Follow us on Facebook, Twitter, and Instagram and use #RUNLHH.

The American Heart Association’s Equity-Focused 2022 Public Policy Agenda Builds on Health Impact in 2021

Every day, Americans’ lives are touched by heart disease and stroke. Whether it is our own health that is impacted or the lives of family members, friends, or co-workers, there is a lot at stake when it comes to fighting our nation’s No. 1 and No. 5 killers – cardiovascular disease and stroke. As a champion for health equity in the Greater Washington Region the American Heart Association (AHA) will advance cardiovascular health for all by supporting legislation that removes barriers to health care access and quality, improves access to nutritious food and water and strengthens funding for community and family programs.

The AHA Greater Washington Region recently released its 2022 public policy agenda.

“The proposed priorities build on the community-based health impact of recent

Dr. Asch
Dr. Federico Asch, president of the Board of Directors, American Heart Association Greater Washington Region

years and seek to promote health equity across Northern Virginia, Washington, DC and Prince George’s and Montgomery Counties in Maryland,” said Dr. Federico Asch, president of the American Heart Association Greater Washington Region Board of Directors and cardiologist at MedStar Health. “In 2022, the AHA, its You’re the Cure advocates and coalition partners will tackle a variety of urgent community needs including food security, tobacco control, health equity, and emergency response.”

Highlights of the policy agenda include:

  • Implementing and funding DC’s flavored tobacco sales restriction law passed in 2021.
  • Ensuring all 911 call takers are trained to teach CPR over the phone
  • Expanding access to water and reducing sugary drink consumption in schools
  • Creating heathier kids’ meals menus at restaurants
  • Increasing access to healthy and affordable fruits and vegetables
  • Identifying funding for health equity programs
  • Expanding postpartum Medicaid coverage to 12 months

This equity-focused 2022 agenda builds on important health impact in 2021, which included legislation that:

  • Restricts the sale of flavored tobacco products, including e-cigarettes and menthol in Washington, DC. (only the 2nd state to do so).
  • Requires restaurant kids’ meals in Prince George’s County to meet healthier nutrition standards for both the food and beverage (the nation’s only such policy).
  • Doubles DC’s investment in Produce Rx, allowing more  under-resourced residents to access affordable and nutritious food.

By convening advocates and community partners, the AHA makes a difference by putting forward policies that help build healthier communities and healthier lives. For more information and to get involved, sign-up at: https://www.yourethecure.org/.

Click here to view the entire 2022 DC Policy Agenda.

EmPOWERED to Serve Business Accelerator™ Faith-Based Workshop Highlights Powerful Partnerships, Kicks-Off Grant Application Period

Webinar panelists four-pane
Webinar panelists share wisdom around community impact.

The power of partnerships built on trust, dignity and respect was a key theme during March 17th’s EmPOWERED to Serve Business Accelerator™ Faith-Based Workshop Zoom webinar, hosted by the American Heart Association (AHA), Eastern States region.

“When you see value in people, it affirms that value that is in you,” said Dr. Abraham Shanklin, Jr. Founder/Executive Director of the Center for Transformation in Maryland, an AHA collaborator.

During the webinar, Shanklin and ENON Tabernacle Baptist Church Rev. Leroy Miles, Jr. of Philadelphia, provided tips based on their own experiences in bolstering scalable community impact.

“It’s about those relationships that give you access,” said Miles. “Don’t be afraid to try, don’t be afraid to ask.”

Shanklin speaking
Bishop Shanklin

Shanklin and Miles offered wisdom gleaned from their own community leadership experiences to inspire webinar participants as AHA, Eastern States region launched the application cycle opening for it’s EmPOWERED to Serve Faith-Based Accelerator. The Faith-Based Accelerator is a grant-funding initiative for faith institutions and leaders to continue and scale their business models aimed at addressing social determinants of health in their communities. AHA aligns with faith-based communities to improve health and empower sustainable outcomes. Applications for a total of $105K in grant funding to communities of faith in select states will be accepted through April 30, 2021. Learn more or apply here.

Miles headsot
Reverend Miles

Shanklin and Miles were joined by AHA’s Vice President, Health Equity and National Partnerships Pamela Garmon-Johnson, who emphasized how important it is to deploy resources “connecting the dots so that we can have the greatest impact on our communities.”

“We have been charged with a purpose in order to be the voice for the voiceless….when we put all of our resources together that is when we can truly, truly put together the greatest difference,” said Garmon-Johnson.

Both Miles and Shanklin have successfully bolstered efforts to positively impact the social determinants of health in their own communities — factors that influence where and how people live, learn, work and play and provide context to a person’s life. Social determinants can play just as big of a role in affecting health as medications and physical lifestyle changes. Their work has included focusing on recidivism, family stability, food security, and health knowledge.

“We’ve tried to be a model and help you replicate [successful programs] at your spot,” said Miles, who collaborated to move ENON’s annual “Know Your Numbers” health-screening day, aimed at reaching 1,000 Philadelphia men, to a drive-through experience amid COVID-19. Participants were able to get take-home colon screening kits, HIV screenings, BP checks, glucose, cholesterol, and COVID screenings at the event which Miles termed a “significant pivot in such a time as this.” AHA provided take-home blood pressure kits for self-monitoring for those who were found to be hypertensive.

“You all are heroes in your respective areas, the assignments that you have, the passion that you have. All of these ideas [we are putting forth], they serve just as starting blocks,” said Shanklin. Among the many initiatives of the Center, Shanklin and his partners were able to feed 1200 people in Maryland and distribute over 50K pounds of food by leveraging county relationships.

Both Miles and Shanklin highlighted the value of partnering with organizations, including AHA. “I love the partnerships with AHA and EmPOWERED to Serve,” said Shanklin. Miles noted that the reimagined “Know Your Numbers” program gained traction due to partnerships with local AHA board members and Einstein Health.

“Powerful partnerships, meeting people where they are, and speaking with a trustworthy voice are three of the AHA’s Guiding Values — our 10 commitments to health equity — this shores up making sure that we are holding ourselves accountable so that we can make an impact,” said Garmon-Johnson.

American Heart Association, Eastern States Vice President Health Strategies Rhonda Ford-Chatmon asked webinar participants to provide feedback so that AHA can continue to strengthen community partnerships.

“Tell us what you need. We are here to be responsible. We are listening to you, and we want to be of help,” said Ford-Chatmon. She invited anyone with community needs to email questions or ideas to 2021FaithBasedAccelerator@heart.org

To watch the entire workshop, click here.

Blakely’s Story – One Parent’s Story of fighting a Congenital Heart Defect

Melanie Withers is a Heart Mom who wants to continue to share Blakely’s story, not only to keep her story alive but to help other Heart Parents who are facing similar battles.

If you are reading this, consider yourself privileged. Privileged to even hear the story of my sweet Blakely Elizabeth. She was feisty, she was loving, she was her mother’s whole world. She is all of these things, even in her death.

During my pregnancy with Blakely, around the time of the anatomy scan we were told that a fetal echo needed to be done because there was some extra fluid around her heart that they were seeing. The echo was scheduled a week or so later. And then they wanted it repeated. At this point (and even before) I just knew deep down in my soul that something was wrong. What could possibly be wrong with my baby? All I knew at this point was that I wanted answers. After the second echo we were told by the pediatric cardiologist that Blakely’s heart was PERFECT! That was such a relief to my ears. It made the pregnancy fly by knowing that nothing at all was wrong with our baby.

Fast forward to her birthday. I went in the night before to be monitored before my scheduled c-section. I didn’t sleep any that night. Doctors and nurses were in and out. But, finally, the time came – 8 a.m. The time that she would make her grand arrival. At 8:29 am on April 27th 2016, Blakely Elizabeth Hopkins was born at Johnson City Medical Center in Johnson City, TN. Her dad was in the room and was able to hear her first cry as well! Such an exciting time, until you can feel the whole mood of the room shift. Instead of congratulating you, they are rushing around and whispering. You automatically know something is wrong. After repeatedly asking the doctors what was wrong, one of them finally responded with “We’re not sure. The NICU team is on their way to get her.” They brought her over for a few pictures before the team got there. I could see her chest rise and fall and her legs kicking around, so at that point I at least knew my daughter was alive.

Once Blakely was taken to the NICU, it was a few hours before even her dad could go and see her. Of course, they had to try and figure out what was going on, and that is all that mattered. Figuring out what in the world was happening to my perfect baby. Shortly thereafter, some doctors came to speak with us. They said they believe it to be something going on with her heart, that it could be Truncus Arteriosus, but they weren’t really for sure. They were going to consult with some other hospitals to figure it out. How could something be wrong with her heart when we were just told weeks before that Blakely’s heart was perfect? After what seemed like a lifetime, the Pediatric Cardiologist that told us that he had consulted with UVA and that Blakely had what is called Tetralogy of Fallot with Pulmonary Atresia. They would be sending her to UVA by jet once their NETS team arrived to get her. Once the doctor stepped out of the room, he took a phone call. It was UVA. My aunt was still outside of the room and heard him tell the doctors at UVA, “I missed it. I didn’t see it before but looking back I see it now.” How could he have told us that Blakely’s heart was perfect when in fact it wasn’t? At this point all that mattered was that my daughter was alive and doing fairly well. I knew she would be transported to UVA where they could hopefully give her the help she needed. We finally got to go upstairs and see Blakely. She was precious – the most beautiful baby you ever saw. Fiery red hair, perfect little fingers and toes. The NICU at JCMC doesn’t usually let underage siblings back to visit, but they made a special exception for Blakely’s sister.

The next few hours flew by. The NETS team from UVA arrived. They talked to us multiple times, trying their best to explain everything that was happening and what would happen on the flight. The flight was delayed for a few hours because of bad thunder and lightning storms. Blakely finally arrived at UVA Children’s Hospital at 3:17 a.m.

The following morning, we arrived at UVA. We had quite a drive as UVA is about 5 and ½ hours from our house. Nurses, doctors, RTs, NPs and multiple other people were coming in and out of our room the whole time. Trying to learn how to do the most basic things with our newborn was a struggle, with her finally being able to take her first bottle a victory. All of this was leading up for the big day: her surgery day. At just 8 days old, my little baby would have to undergo such a horrible but necessary surgery. The day of surgery she had her BT shunt placed by Dr. Gangemi and Dr. Roeser. It was such a long day but when Dr. Gangemi came out and told us how good she was doing, it was like the weight of the world was lifted off our shoulders. Even with it going perfect, he still said that she was the most critical patient the hospital had that night. That hospital stay was up and down as she had her really good moments and she had moments that would bring you to your knees. Even though her surgery went great, in my mind it was the worst thing that could happen to my perfect baby. But all in all, she recovered quite well.

As a couple months went by, life seemed to return to “normal” – going back to work, taking care of a newborn, trips to UVA every 3 weeks. But, we also now had the responsibility of what came with having a child with a BT shunt. Weight checks every day, weighing diapers, recording intake, and monitoring her oxygen level. At almost 5 months old, Blakely needed her second OHS, her full repair. That surgery went great as well. Dr. Gangemi, Dr. Roeser, and Dr. Stone worked nonstop for the 16 hours she was in surgery. But as with the other, this surgery went great. The few days following surgery, however, were a different story. I stayed by her side as much as I could. She had so many critical moments, mostly at night. Her lactic acid would rise, she would need more oxygen, and finally the talk of ECMO if she got any worse. Eventually, she got to the point that she could be extubated. On October 11th, 2016, at 6:21 a.m. her dad called and said that Blaklely was getting worse and they were going to have to re-intubate her. The elevator couldn’t go fast enough. The people on it with me probably wondered what in the world was going on with me.

I made it to her room in 3 minutes from the time I got the call. At that point there were so many people in her room. Dr. Joey as we called him was doing chest compressions. She was in cardiac arrest. Dr. Joey would look at her, then look at me, he kept working though. He never gave up on our girl. For 60 minutes Blakely got chest compressions. Blakely’s PICU room would soon be turned into an OR. They opened her chest again to place the ECMO cannulas. Sam Loya, RN and Dr. Dean would make trips back and forth from her PICU room to the family room we were finally taken to. They made probably 20 trips a piece while the surgery was happening, just to keep us updated. The surgery was successful, and she was placed on ECMO. A blood gas was taken at some point and her lactic acid was 28. Her kidneys took a hit during all of it and she was in kidney failure. Her brain took a huge hit because, of course, she was without oxygen for so long. In the next couple of days, she would need a PD catheter placed so she could start dialysis. She was also soon diagnosed with severe HIE. After a 4-day ECMO run she was able to be taken off without any further problems.

The next couple of months were mostly good for her. Her kidneys recovered and she was able to stop dialysis. She needed to have a trach and g-tube placed but we were okay with that. Whatever she needed, that’s what we did. She celebrated her first Halloween in the hospital. With the help of her nurse, Dana, we dressed her up as a ladybug and Dana had a friend come paint her nails. She was perfect. We got to the point that we could hold Blakely again. Just a few weeks ago we didn’t know if she was going to live, much less us be able to hold her again. On December 19th,2016, she was discharged from the hospital.

She spent Christmas at home. We learned EVERYTHING about our daughter. The good, the bad and the ugly. What to do when the “ugly” happened.  January 11th, 2017, we made our way back to UVA for appointments. Two days’ worth of appointments was what was in store for us. But on the last day, Friday, January 13th, I knew something was wrong. She was throwing up more and she was lethargic. Finally, at our last appointment the other doctors were able to see the change in her as well. The doctor called over from the Battle Building to the Hospital and the Pegasus Ground Critical Care came and got her and transported her by ambulance to the ER. Her glucose was unreadable on the machine, her oxygen wouldn’t pick up, and after two failed IO’s the PICU attending just wanted her on the PICU floor. He came down and escorted her himself with three of his nurses. It was touch and go. We heard from multiple people that they didn’t think Blakely would make it that night. But in true Blakely fashion, she didn’t go by the rulebook and made up her own. Every single time they would predict a way that things would go, it would go the opposite.

We also heard from a doctor that there was nothing else that could be done for her, that I should just put her in a long-term facility because I could not revolve my life around her. If you are reading this, NEVER say that to a parent. Never say that their life cannot be centered around their child, who probably IS their life. Needless to say, she never saw that doctor again. We got second opinions at the Children’s Hospital of Philadelphia and Boston Children’s Hospital. She had a pretty lengthy hospital stay. She was discharged on March 24th,2017 – one day before her sister’s birthday. What a present McKenna got! Blakely got to celebrate her first birthday at home. We had a huge birthday party with all her favorites. I definitely went overboard but what else was I supposed to do when this day had been threatened so many times? I gave her the birthday party she deserved.

Day-to-day life with a medically complex kid is definitely not for the weak. Blakely was on multiple medications and got medicine 19 hours of the day. She got feeds multiple times a day and night. She was on a strict schedule of being turned every 2 hours. Some days we had nurses to help, sometimes we didn’t. If I have ever been strict with anything in my life, it was the care Blakely got. I had a huge whiteboard hung beside her bed with her medicine schedule. I had another one right beside of it with what I expected. Blakely never got a bath unless one of us was there. She got a bath, trach care, trach change, lotion, her hair dried, socks on, bib placed underneath her trach so it didn’t rub, and oral care. All of this happened most days, unless we felt she needed to rest. She got PT, OT, speech, and vision therapy once a week. She got moved to her activity chair and stood in her stander every day unless we felt she needed to rest. And by me saying she needed to rest, I mean she was having an off day and I could tell she wouldn’t tolerate it.

Life with Blakely was definitely very busy. And even with all of that, I still made sure she did things for fun. She went to the beach, she loved chocolate pudding, she played on a special needs baseball team for 2 years, she went to the fair, she went to Dollywood and rode rides, she would go out to eat with us, she would go grocery shopping with us, she went to visit family in other states, watched her sister play softball and was her biggest fan. She did everything a normal toddler would do. She made trips to UVA every three months with two full days’ worth of appointments every trip. Blakely eventually got approved by insurance to go to CHOP to see Dr. O’Connor. To our surprise, her heart actually started getting better. Heart failure was almost nonexistent. Dr. O’Connor said no doctor should ever tell you nothing can be done. It may not do any good, but something can always be done he said. I will never forget those words. Between CHOP, Joy, Dr. Dean, and all her other doctors from here to there, she was actually getting better. These people were helping my daughter not only survive but THRIVE!

Every now and then Blakely would get a UTI which landed her in the Nisewonger’s Children’s Hospital, the same hospital she was born in. Usually, it would clear up with IV antibiotics. In November of 2018 it was a little more serious. She would possibly need dialysis and had to be transferred to a hospital that could do that. Our local hospital called UVA and Nisewonger’s to see if they could take her. UVA was full and Nisewonger’s didn’t do pediatric dialysis. Along with UVA, ETSU Children’s and Vanderbilt were full as well. Brenner’s Children’s in North Carolina was the only one able to take her. Once we arrived down there (in an ice storm) they were able to take a closer look at Blakely. She didn’t quite need dialysis but her kidneys were definitely not in the shape they had been. We stayed there for probably three weeks or so but eventually got discharged. Going home this time, Blakely would need to be on a catheter every 4 hours along with all of her other care. When speaking to her doctors at UVA we were able to wean down all the way to just needing a catheter every 12 hours unless voiding on her own (which she did sometimes).

The summer of 2019 was spent in the hospital with Blakely some. She had two hospitalizations in about a month and a half, and was living her best life the rest of the season. We would go watch movies in town at dusk. She loved getting to snuggle with everyone and watching Spongebob in her bed. She loved to feel the wind blowing her hair and would always give us the biggest smile. Even with severe HIE Blakely had the biggest personality. You knew when she liked something and DEFINITELY knew when she didn’t. She would hear Dennis or I come into a room and her head would automatically turn towards us.  She was working towards weaning off the vent to hopefully decannulation. She was scheduled for her Make A Wish trip in November of 2019. Everything was going perfect. On August 9th,2019, Blakely showed me signs of yet another infection. With her, signs of infection weren’t what they would normally be in another child. Her temperature would drop instead of rise. It would get as low as 92 degrees with a UTI. With her having a lower temperature and some other signs, I decided to take her to Nisewonger’s again because I just knew something was off. Call it a mother’s instinct.

We got there and got admitted once again, this trip her sister was with us. She got to see how everything goes for us and for Blakely when she gets admitted to the hospital. Once they started her on antibiotics her symptoms presented themselves a little bit more. Low blood pressure was also one of the symptoms she had once they started her on antibiotics, this was nothing new. To be honest, it was touch and go that night trying to keep her blood pressure up. The next day they decided to take her down to the OR to place a central line. Even that would be a struggle for them. She made it back up to her room and they decided to switch her over to use the new line. Seconds after the switch was made, she started to decline fast. Her blood pressure dropped, her heart rate was out of whack, and these horrible things were happening right in front of my eyes. They quickly made the switch back to the other line. Doctors, nurses, the pharmacy – everyone in the room was basically running a code. During that busy time I couldn’t help but ask if all of this was happening because of the central line? Did it fail? To my surprise the nurse that was doing everything replied with “Yes”. It took a little bit, but Blakely was holding her own with help of medicine. The rest of that day, night and the next morning I spent by Blakely’s bedside, watching numbers and kissing her sweet face, talking to her telling her that I know how strong she is and how much I loved her. Family was on their way to the hospital when Blakely started declining again. She was basically maxed out on every medication and they were going to start chest compressions.

Hold on. Previously I had stated Blakely was full code. I knew she was no longer eligible for ECMO, but they were to do everything in their power to save my daughter. I had told them to do everything unless I said otherwise. But how could I let my daughter, who had been through so much in her short three and a half years, go through more because of my selfish ways, because I wanted her here with me?

That is when I realized there was no more was to be done. I wanted my daughter in my arms so she would know in her last minutes just how loved she was. Chris, her nurse at the time, did exactly as I wanted. She gave me Blakely. I told her to unhook everything. No more ventilator, no more IV’s, no more monitors. Just a girl in her mother’s arms. At 1:37 p.m. on August 13th,2019, my sweet Blakely Elizabeth passed away in my arms. No matter what happens that will always be the worst moment of my life. She went peacefully. No suffering. You would have never known that she wasn’t doing anything but sleeping.

Having a medically complex child, especially with heart and lung issues, you spend a great deal of your time watching your child breathe. Watching their chest rise and fall. For me, there was no more of that. It was the last time I would see my child take a breath. The next little bit is a blur. I remember holding her and talking to her. I remember crying and getting physically sick. I remember doctors and nurses checking on us, I remember Childlife taking my other daughter when she got there to explain things with her. I was there, holding McKenna, but to this day I can’t remember a thing they said. I was trying to be there with her, but my heart was 5 or 6 rooms away. I remember doing the hand molds of Blakely. I remember what blankets we kept on her and what stuffed animals she had. I remember Chris being there, telling me what a good mother I was and how she knew Blakely knew how much she was loved. Family came in and out and said their goodbyes. We gave her a bath, got her dressed, tucked her in bed and laid there with her until the funeral home came.

They say that it gets easier with time. I’m telling you right now the heartbreak I felt the day she died is the same heartbreak I feel today. It is a pain you can feel inside your bones, especially knowing that you are the mother who made that decision. And that’s something that I will have to live with for the rest of my life.

I have told you all so much stuff and it’s still not even close to everything. I’m sure I left out some things. I’ve probably forgotten to include specific details. Taking care of Blakely was not easy, and I’m not even going to pretend it was. Even when she was doing good, day-to-day life was a struggle. Meds, turning, bagging her when she had difficulty breathing, emergency trach change, g-tube changes, making sure we had everything we needed when we left the house with her, and seeing to it that she had the very best care possible. Sure, I could have left her in a long-term facility when she was six months old like the doctor told me to; but, that’s not who I am as a person. My daughter is my responsibility, no matter what. When you have a baby, you think that taking care of them is going to be sunshine and dirty diapers. You don’t realize that in the blink of an eye your baby could be trached and ventilated for the rest of their life. That they will have to depend on you for every single move they make and every bite they take. You go from birthday parties with all your mom friends to having very few friends because no one really understands what it’s like. As hard as it was, I would do it all over 15 times just for one more day with Blakely. I have said for a year that people will know Blakely even in her passing. They will learn from her. They will learn her story and they will learn not to take anything for granted. I am working with the American Heart Association in getting the Kids Heart Challenge in our local schools in honor of Blakely.

 

Kids who are medically complex and have special needs (and their parents) only want one thing: to be treated normal. They want friends, they want invited to birthday parties. They want Christmas at home and any other normal thing that comes along the way. Even if they are nonverbal, say “Hi”. Talk to them as you would talk to anyone else. Get to know them. Understand that it’s difficult on their parents too, even if they are holding it together really well.

Without Joy, Dr. Dean, Morgan, Yoshi, Chris, and all the other people that played a tremendous role in Blakely’s life, I don’t think she would have lived to be three and a half. Knowing that you have people you can count on, no matter what, makes all the difference. So, if you have the chance to work with medically complex kids and their parents, consider yourself lucky. They’re the cream of the crop!

The American Heart Association, Kaiser Permanente Team Up to Encourage the Greater Washington Region to Go Red and be Healthy for Good

The American Heart Association, the world’s leading nonprofit organization focused on heart and brain health for all, is excited to announce that Kaiser Permanente, has teamed up with the Greater Washington Region division to advance a shared goal to help

Ruth Williams-Brinkley, Regional President of Kaiser Permanente in the Mid-Atlantic States

community members live longer, healthier lives free of heart disease and stroke. Kaiser Permanente has joined as a three-year Healthy for Good sponsor in the Greater Washington region and a founding member of the DC Go Red for Women campaign. Together Kaiser Permanente and the AHA also will launch a series of digital conversations to provide education on critical health priorities.

As part of this sponsorship, Ruth Williams-Brinkley, regional president of Kaiser Permanente, will lead the 2021 efforts for DC Go Red, and will chair the 2022 Greater Washington Region Heart Walk. The Association also recently announced that Jill Feldon, vice president of Strategy Communication for Kaiser Permanente, will chair the 2021 Greater Washington Region Heart Walk.

“It is through powerful commitments like this that we can drive sustainable change across our region,” said Soula Antoniou, Executive Director of the American Heart Association. “Over the next three years Kaiser Permanente will help us to engage the Greater Washington community in new and profound ways that lead to improved physical health and mental well-being. Through their support of the inaugural DC Go Red for Women campaign, they are helping to ensure that all women have an opportunity for a healthy, positive future for themselves and those they care for.”

February is American Heart Month and underscores the importance of the campaign’s goal to build awareness that cardiovascular disease is the leading health threat and that people should take action to lower their risk – particularly women. As the first DC Go Red for Women campaign chair, Williams-Brinkley will lead the 2021 fundraising efforts for Go Red, which encourages women to take charge of their heart health and combat heart disease and stroke.

As regional president of Kaiser Permanente in the Mid-Atlantic States, Ruth Williams-Brinkley oversees care delivery and health plan operations in Washington, D.C., and suburban Maryland, Baltimore and Northern Virginia. The region operates 34 medical office buildings and has 770,000 members.

“I am honored to lead the inaugural DC Go Red For Women campaign and to have the opportunity to make a lasting impact on the heart health of people in the communities we serve,” said Williams-Brinkley. “This mission is near and dear to my heart, as it is an extension of the important work being done at Kaiser Permanente to eliminate health care disparities and expand access to care for all in our community.”

The DC Go Red for Women campaign extends the legacy of longstanding women-focused events like An Affair of the Heart Luncheon & Fashion Show to create additional experiences to support women where they are and continues to promote the lifesaving work of the American Heart Association. An inaugural DC Go Red for Women celebration will be held later in the Spring. Plans will evolve based on CDC recommendations around gathering and the nation’s health landscape. The Go Red for Women movement is nationally sponsored by CVS Health and locally sponsored by Kaiser Permanente.

To get involved and for more information, please contact Heidi.arnold@heart.org or visit DCGoRed.heart.org.  Follow along with event updates at the Facebook listing and on FacebookTwitter and Instagram use #GoRedDC.