Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

My Cause My Cleats 2018

 

 

NFL / #MyCauseMyCleats

Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

Jacksonville Jaguars Kicker and Pro Bowl contender, Josh Lambo, brings much needed attention to congenital heart disease with his My Cause My Cleats charity selection for 2018. This NFL tradition will place CHD in the national spotlight, this football season. Josh will wear his cleats, recognizing PCHA during games 13,14, and 15! By highlighting CHD, Josh and the Jaguars pay tribute to patients and families affected by the most common birth defect. 

My niece was born with a hole in her heart and is regularly challenged by her condition. The Pediatric Congenital Heart Association’s goal is to conquer heart disease and I strive to bring awareness to their mission in hopes that they can help my family and others overcome hardships in their health.

Click on the Instagram post below to see Josh’s video announcement where he shares about his niece Leah, who was born with a hole in her heart. “She had to have open heart surgery when she was three months old.”  He notes that it was a difficult time for his family, “it’s a stressful time in any one’s life.”   Josh shows his incredible compassion and his reason for supporting PCHA: “For any other families that have to go through that, I want to make sure that they are well taken care of.”  We are thrilled to hear that Leah is doing well now, loving life and doing great!!!

We thank the NFL, The Jacksonville Jaguars, and, especially, Josh Lambo for bringing awareness to congenital heart disease through their support of the Pediatric Congenital Heart Association. 

More coverage:
Jacksonville Jaguar News Release 
Bleacher Report Coverage

About Congenital Heart Disease (CHD) – CHD consists of problems with the heart’s structure or the way it works that are present at birth, including related lifelong consequences. CHD is the most common birth defect, affecting 1 in 100 babies born each year.  CHD is a lifelong disease requiring ongoing specialized care, there is no cure. There is an estimated 2.4 million people living with CHD. Twenty five percent of children born with CHD need heart surgery or other interventions to survive, yet as patients grow up, fewer than 10% of adults are receiving recommended care. Congenital Heart Disease is the #1 cause of birth defect related deaths,

About the Pediatric Congenital Heart Association –  The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness. Visit our website at www.conqueringchd.org

For additional information, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

Find us on social media:

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#GivingTuesday: Give Knowledge. Give a Voice. Give Hope.


Here are a few key ways to make an impact on #GivingTuesday:

 

Donate or Create a #GIVINGTUESDAY Facebook Fundraiser

Make every dollar matter when you give to PCHA by helping us put essential resources into the hands of hospitalized patients and families. Whether two days old, or twenty years young, having knowledge, a voice and hope is essential, particularly when in the hospital. Every dollar donated on today supports our care bags containing nationally respected educational resources and soul soothing comfort items.

Donate to our Giving Tuesday Facebook campaign HERE

Stretch your dollar – Create your own Giving Tuesday Campaign for PCHA on Facebook and challenge your friends and family to give, too!!

Not on Facebook? No worries, you can still donate through our website.



Echo the Owl Holiday Sale!

Due to popular demand we are extending our Black Friday Echo sale! Purchase by December 10th to receive your Echo in time for a holiday gift, and help us Conquer CHD! Get 25% off your purchase of Echo the Owl and we’ll also give one to a patient hospitalized due to Congenital Heart Disease.

Use promo code: ECHO25

when you head to our online store.

This adorable plush owl stands 8 inches tall. His fur is soft enough to melt anyone’s heart. The heart on his chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

 

 


Join PCHA in Washington D.C.!

Registration is open for the 2019 Legislative Conference in Washington D.C.! Join us as we unite our voices with The Children’s Heart Foundation and Adult Congenital Heart Association to educate our members of Congress about Congenital Heart Disease!

When you attend this conference you will:
– Learn about current CHD activities in Washington D.C.
– Learn how to effectively tell your story.
– Connect with other CHD patients and professionals.
– Share your story with your members of Congress.
– Inform your legislators about the need for research and data collection.
– Make a difference on behalf of those living with CHD!

Your voice matters and together, we are #ConqueringCHD  

REGISTER HERE


 

Connect with your Local State Chapter

Help improve the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.  Through local activities like peer-to-peer support, care package distribution and educational materials, we are working directly with patients, families and medical professionals impacting one life at a time. Get


Finally, Celebrate all we are doing, together, to Conquer CHD!

Delbert Collins

Our handsome baby boy Delbert was born at the Children’s Hospital Colorado in December 2017. Del was originally diagnosed with aortic stenosis but after he was born doctors were able to determine it was actually hypoplastic left heart syndrome (HLHS). He spent his whole life in the hospital, and during this time he went through 11 surgical procedure, 5 of which were open heart. At 2 months old he suffered a stroke leaving him without 40% of his brain function. Even through all of this he continued to fight. Delbert won his fight on Father’s Day 2018 and became one of the most beautiful Angel’s our family will ever know. He was so strong and fought so hard, and we will forever miss him. I hope he brings as much happiness to heaven as he did to us while he was here.

Patrick William Walker White

On September 20, 2018, at our twenty week ultrasound, we found out that our beautiful baby would not only be a bouncing baby boy, but also a heart warrior. It took two days and multiple scans to finally be diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Basically he would be born with half a heart.The following days and weeks were filled with heart ache and fear of the future our baby faced.
In January, we relocated to Denver to be close to Denver Children’s Hospital and the doctors that would be treating our little boy. On January 30, we were unexpectedly told we would be delivering early. Eighteen long hours later, Patrick William Walker White made his debut after an emergency cesarean section. He was rushed away to have lines put into his belly button, so they could deliver life saving drugs.
At five days old, “Walker” had his first open heart surgery to place a BT shunt. This would help his heart pump blood to both his lungs and his body. After days on a breathing machine, Walker made great progress and was able to breath on his own. Soon after, he was moved to the CPCU or step down unit. He excelled in eating, which is not usually the case with babies diagnosed with HLHS. Despite the great work in eating, Walker could not breath on room air. Many more scans were done, and it was established that Walker would need a heart catherization procedure to place a shunt into his stent. During this procedure, at less than a month old, Walker’s lung was punctured, causing it to fill with blood. Due to the complication, Walker ended up in cardiac arrest and had to have a chest tube placed. Over the following week, Walker shocked the doctors and healed amazingly! We soon got to leave the hospital, after a total of 35 days.
We enjoyed time as a family around Denver, but it soon became apparent that Walker would need another procedure to place a second stent in this shunt. During the next months and a few short hospital stays, we found out his heart function was declining. Due to the decline in hearts ability to pump blood, the doctors decided his second open heart surgery was going to be performed earlier than expected. At 3 months and 10 days old our beautiful, happy boy was taken in for his second surgery. We were told to expect a short recovery, but it ended up differently. Walker suffered more damage to his lungs while on bypass, landing him in the hospital for close to another month.
On June 8, 2018, at five months old, Walker was finally able to leave Denver and come home to Albuquerque. He has been doing very well and continues to see a cardiologist and pulmonologist regularly. This is not the end of Walker’s journey, because there is no cure for HLHS. He faces at least one more open heart surgery and most likely a heart transplant at some time in his life. For now we love on our sweet boy and cherish every moment and memory.

Katherine Lange

Gary and I went to our routine, 20 week ultrasound for the anatomy scan of our little nugget. We were excitedly watching our sonographer go through her hands, feet, arms, legs, kidneys, liver, then her heart. She finished and told us to wait in the room, while she went to talk to the doctor. We waited impatiently for her to come back. Gary and I were getting anxious, because we had to get to our restaurant, Kasey’s, to open for the day. When our sonographer finally came back, she brought the doctor. (Uh-oh!)

He said, “I hate having to tell parents this, there appears to be a defect in her heart.”

Our hearts dropped. Surely, there was a mistake. He referred us to see a Pediatric Cardiologist for a definitive diagnosis. Two days later we were at UNMH, with Dr. Goens, doing another ultrasound. Afterwards, she told us our baby girl had Hypoplastic Left Heart Syndrome (HLHS). After many discussions and many, many, questions to Dr. Goens and one of her nurses, Pamela, we were going to Children’s Hospital of Colorado to have our first baby. We were to live there through her first two planned surgeries, for about six months. We closed our restaurant on June 30, 2017. I was flown up to Denver on August 11, while Gary drove with my mom in our fully-packed car.

Katherine was born on Monday, September 11, 2017. I got to hold her for about one minute, before they took her away to do an echo and get the umbilical lines in. She slept for about three days, because of the medicine she was on, and had her first open-heart surgery when she was four days old. She did great. She had a rough first night post-surgery, but her recovery after that night went really well. She is a fighter!

We lived in the hospital with her for three weeks. We took her “home,” to the Ronald McDonald House, on October 6 and struggled with her eating until January. Before her planned second surgery, we were re-admitted to the hospital three times; once for an irregular EKG, once for blood in her stool, and once for her low/almost no weight gain. We fed Katherine every three hours, religiously, for four months. Katherine had her first Cardiac Cath just after Thanksgiving, where they determined she needed a stent in her BT Shunt (that was put in during the Norwood, first surgery).

Katherine then had her Glenn procedure on January 17, 2018 and woke up a different baby! Her first bottle after the surgery was almost four times what she was eating before the surgery. She was awake, alert ,and wanted to play and eat! However, she was not able to keep her oxygen level up in the good range, so she had another Cardiac Cath; they determined she needed a stent put into her Inferior Vena Cava (IVC). We got to take her home, to Albuquerque, on February 7, 2018. During the last Echo in Colorado, the doctor found that Katherine’s Tricuspid Valve was moderately leaking, but they would keep an eye on it and determine what needed to happen down the road. We made one more trip to Colorado for a Cardiac Cath in May of 2018, where they put a stent in her Left Pulmonary Artery. Since we’ve been home, Katherine has been having a great time. She loves to play and laugh, and she is pulling herself up on everything now! It won’t be long before she’s walking!

ACTION ALERT: Congenital Heart Futures Reauthorization Act is moving forward – we need your help!

ACTION ALERT:

Congenital Heart Futures Reauthorization Act is moving forward – we need your help!

The Congenital Heart Futures Reauthorization Act passed the House, this past February and is now making its way through the legislative process in the Senate.

We are thrilled to report that this Wednesday, July 25, the Senate Health, Education, Labor and Pensions (HELP) will hold a mark-up of the CHFRA. This is an essential step to move the bill out of Committee toward becoming a law.

The Congenital Heart Futures Reauthorization Act will authorize the CDC and NIH to build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  More specifically, the bill will:

  • Expand the CDC’s longitudinal surveillance of individuals with CHDs across the lifespan, including regarding healthcare utilization and demographics through a cohort study, leading to evidence-based practices and guidelines for CHDs.
  • Authorize an awareness, outreach and education campaign at CDC, which will help inform the children, adolescents and adults with CHDs who are unaware of their high risk of additional complications as they age about the need to seek and maintain lifelong, specialized care.
  • Assess the research needs and existing projects related to CHDs across the lifespan at NIH, which will allow us to better understand the current state of biomedical research and what gaps may exist.  

 

ACT NOW:

This is the perfect time to reach out to your Members of Congress and remind them to support S.477 (The Congenital Heart Futures Reauthorization Act). Email, call, tweet, connect with them today!

We are also specifically targeting the offices of those who are on the HELP Committee, participating in Wednesday’s mark-up.  If you live in the following states, please call or email your legislator, today!! See below for a complete list.

  1. Find your Senators: www.Senate.gov
  2. To send a quick tweet: Calling on @SENATORNAME to support S.477 in upcoming mark-up on Wednesday. It matters to me and 2.4M others with #CHD. #Conqueringchd #CHD4Life
  3. Call or email:
    1. If you are calling be sure to include the following:
      1. My name is __________ and I’m calling from __________.
      2. I’m asking the Senator to support S.477, the Congenital Heart Futures Reauthorization Act during the mark-up process, this Wednesday, July 25
      3. Congenital Heart Disease is important to me because ___________
      4. This legislation will help build upon existing work by the NIH and CDC, build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  
    2. If emailing:

Dear Senator _____,

I’m writing from ___________.  As your constituent, I am asking you to support S.477, The Congenital Futures Reauthorization Act  during the mark-up process, this Wednesday, July 25.

This important legislation will authorize the CDC and NIH to build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD.  

This matters to me because ____________.

Thank you for your time and consideration.

Sincerely,

Name

 

Senate Help Committee Members:

 

5 Ways Heart Families Beat the Summer Heat

The summertime sunshine can be a welcome treat after a long winter, but it can also be dangerous. Many people with complex CHD have difficulty tolerating the summer heat. PCHA recently asked the CHD Community, families, and patients to share what they do to beat the heat. This is what they had to say!

 

1. Hydrate! Hydrate! Hydrate!

Our bodies are made up of approximately 70 percent water. Water has many important functions in the body, including; regulating your body’s temperature, digesting food, and excreting waste. Children are at a greater risk of dehydration than adults. This is because in relation to their size, children have a larger proportion of their skin available to lose sweat and be exposed to heat. Additionally, children don’t always recognize that they’re thirsty, and if they’re not encouraged and reminded may forget to drink. Add Congenital Heart Disease into the equation and dehydration can pose an even greater risk.

Here are a few tips to help your kids stay hydrated in the summer sun:

  • Pack a water bottle to have handy whenever you go out. You can even try having a couple of frozen water bottles in the freezer ready to grab and go!
  • Encourage your child to drink water before, during, and after physical activity
  • Always offer and encourage water with meals and snacks, even if they don’t like it!

Tricks for when your kids don’t like or just don’t want water

  • Try adding slices of fruits such as lemon or orange to water, for variety and flavor.
  • Let your kids choose their own cup or bottle to drink from.
  • Be a role model! Make a point of drinking water with your kids.
  • Experiment with ice cube trays; kids can have fun freezing water into a variety of shapes and adding those ice-cubes to their drinks. Check out these great choices: Under the Sea, Star Wars, Stars & Hearts!

 

2. Indoor Activities

Depending on where you live, summertime temperatures can average anywhere between “Oh boy, I’m starting to melt a little bit out here,” to “Someone dump a bucket of ice water on me right now.” The anticipation for the last bit of snow to melt and the warmth that summer brings can’t arrive fast enough but, for some, it can be the moment you began feeling bad about not wanting to leave the comfort of your cool home for the hot outdoors. But despite the pressure to get out and have fun in the sun, you shouldn’t feel bad about staying inside with your heart warrior on those hot days – especially when their causing your cardiac kid serious discomfort.

 

3. Enjoy a Cool Treat

What’s summertime without ice cream? Clearly we know why July, the peak of summer, is National Ice Cream Month. Whether you’re rolling through the Dairy Queen Drive-thru, passing out popsicles by the pool, or busting out a pint of Ben & Jerry’s after the kids go to bed there are a lot of sweet treats that seem to take the edge off of a hot day. We followed up our “how do you beat the heat” heart poll question by asking our followers what their favorite flavor of ice cream was and who knew there were so many different flavors of Ice cream out there!?

Here are the top 5 flavors heart warriors and their parents prefer:

 

#1 Mint Chocolate Chip

#2 Chocolate

#3 Cookie Dough

#4 Peppermint

#5 Moose Tracks

 

4. Take a Dip

Making a splash in the pool or at the beach (or relaxing on a raft) is at the top of just about everyone’s favorite summertime activity list! It’s a great way to stay cool, and get everyone out of the house. Though it’s important to keep in mind each of your swimmers’ strength and that harmful rays can still do damage, even in the water. Be sure to tote the waterproof sunscreen when you’re hitting the water!

5. Soak up the Summer

Some of us just love watching those temperatures rise, soaking up the sun, and feeling that warmth on our faces. It’s important to remember moderation, too much sun can make you sick too! Encourage your Heart Warriors to learn their own limits, while still having fun! Remember to take breaks, find a shaded area if you can’t go inside, plan your outing when the sun’s not at it’s hottest, use a cooling sport cloth, and drink plenty of water!

You’re not alone in looking for fun ways to beat the heat. Love it or loathe it, summer is sticking around, so whatever you do be safe and enjoy it!

 

*Please note the information in this post is not meant to be a substitute for medical advice.

Action Alert: FY2019 Appropriations

Email your Senators, today, and ask her or him to sign the FY 2019 Appropriations Letter being circulated by CHD legislative champions Senator Durbin and Senator Grassley in support of congenital heart disease-related public health research and surveillance initiatives at the CDC.

Each year, we need to make sure that Congress continues to fund the congenital heart disease public health research and data collection at the National Center for Birth Defect and Developmental Disabilities (NCBDDD), with-in the Centers for Disease Control and Prevention (CDC). This budget process is called Appropriations.  Senators Durbin and Grassley have drafted a letter to the Appropriations Committee asking them to support funding for the CDC program to better understand and treat the lifelong needs of those living with congenital heart disease.  They are seeking as many Senators’ signatures as possible.

Email, call, or tweet your Senator or their health staff and ask them to reach out to Max Kanner (Max_Kanner@durbin.senate.gov), today!

Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov
    2. If this is your first time reaching out, use the contact form on the Senator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Senator xyz,

As you are working on appropriations requests for FY2019, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

Please show your support by signing the Appropriations Letter being circulated by Senators Durbin and Grassley.  To add your name, please contact Max Kanner with Durbin (Max_Kanner@durbin.senate.gov)
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

 

Brie Harrison

It was the strangest thing. Something I can’t fully explain. My entire pregnancy I had a feeling that something was different. Leading up to the 20 week scan I kept saying to my husband “I’m scared. What if something’s wrong!?! I feel like somethings wrong!”.  Call it premonition, call it mother’s instinct, or simply coincidence but I was absolutely right. The sonogram tech spent 2 hours looking at my baby when finally a doctor came in and delivered the news “there’s something wrong with your baby girl’s heart.”.  We were terrified. We had no idea what this meant for our baby girl, our baby girl that we had so many hopes and dreams for. We already had a beautiful son and we were so excited to have the perfect family of four. This news was life changing.

Two days later we had an emergency appointment with a fetal cardiologist where it was confirmed that our daughter had a complex and rare heart defect, truncus arteriosus. We decided right then and there we would do everything possible to get our baby girl the best care in the country. A couple months later we uprooted our life in Florida and moved back home to our families in Maryland. We wanted our child to have all her care and treatment at The Children’s Hospital of Philadelphia and we felt a move was necessary. That’s was decision we will never regret.

I was induced and gave birth to Brie on July 27th, 2017 at 37 weeks. She weighed 5 pounds 8 oz. Brie looked perfect. It was hard to believe without surgery our little girl wouldn’t make it more than a few weeks. We are so proud of our heart warrior. Brie has been through more in her short life than most people will experience in a lifetime. We would later find out that Brie also has 22q deletion syndrome (also known as DiGeorge syndrome). 22q can have over 180 symptoms and we have no idea what will end up affecting Brie but we do know it’s why Brie has her heart defect. Brie underwent her first open heart surgery at 4 days old, has had three heart catheterizations, had stents put in to her pulmonary arteries and a few weeks ago had her second open heart surgery. We’ve had experiences that are beyond terrifying. We’ve seen our daughter bleed out from a procedure, we’ve seen her turn blue and need to be revived, we’ve had to push that horrid code blue button but she’s pulled through it all. She’s truly our miracle. Brie’s CHD has no cure and will require close monitoring with many, many doctors appointments at CHOP. We know she will need more open heart surgeries and procedures as she grows. Brie’s next open heart surgery is expected in 3-5 years. We know this is just the beginning but we are positive Brie will continue rockin’ this CHD and 22Q journey. Brie has brought hope and inspiration to so many families battling similar battles. My grand plans for her may be slightly different now but I know she has big plans of her own and I know her little stubborn self will make it happen. Life wouldn’t be the same without her, she’s given life a whole new meaning for us. We cherish the moments, celebrate each victory, and we’ve come to realize we still have that “perfect” family of four we always dreamed of.

Jeremy Park

Jeremy was born on December 24, 2012, with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where one side of the heart didn’t develop. In Jeremy’s case, his left ventricle, mitral valve, aortic valve, and aorta didn’t develop. HLHS requires three open heart surgeries to recreate the anatomy in order to survive.

At 4 days old, he underwent his first open heart surgery called the Norwood. He was in the hospital for 18 days. At 4 ½ months old, he underwent his second open heart surgery called the Bi-Directional Glenn. He was in the hospital for 7 days. He had complications after this surgery that required more testing and a heart catherization. At 2 years and 10 months old he had his final surgery, of the 3-stage palliation, called the Fontan. He was in the hospital for 16 days. He has had many other procedures as well.

Jeremy is 4 years old and is thriving!!  He is happy, full of energy, and his heart function is great!  He loves art, gymnastics, T-ball, and swimming. We know he will have more procedures and surgeries down the road, but we are living life to the fullest!  We are thankful for the support and love that we have gotten from everyone!