Mental Health – Courtney’s Story – A Mom’s Perspective

As we continue discussing mental health this month, Courtney Kile shares with us how her experiences as Heart Mom to son Sully impacted her mental health. Please note that this was originally posted in the summer of 2017.

I still remember the first time it happened. The surgeon had come in to tell us that the open heart surgery performed on my 3-day old son, was an outstanding success.  I remember looking at the surgeon calmly and saying, “Thank you very much,” and I turned on my heel and nearly sprinted down the hallway.  My mom and step mom followed close behind, calling my name, but my brain wasn’t computing her words.  I grabbed the door to the lactation room at the end of the hall and swung it open to close myself inside.

Then I completely and totally lost it.

I sat on the sterile vinyl chair, hugging myself, sobbing, and I think I even drooled a little.  I’d been holding in all these emotions, trying to process everything that happened in the last 30 hours and once I knew he “safe”, I couldn’t hold back anymore.  Little did I know, this would be the start of a near constant internal battle.

My son Sully was born in November 2011, seemingly healthy.  Just 36 hours later, local doctors discovered a Congenital Heart Defect and he was airlifted to the larger, metro hospital.  The 3rd day of his life, a team of doctors and surgeons operated on his 6lb. 8 oz. body. After a spectacular recovery from his first surgery, we handed him off to the surgeons again just 6 months later.  That surgery was also a screaming success.

I considered myself a pretty together person.  I felt like I handled stress well and had healthy coping skills (scarfing a king size Reese’s is a healthy coping mechanism, right?).  As time went on, I noticed myself beginning to change.  When we were getting ready to leave the house for any reason, I would retch and gag, and sometimes even vomit.  I would get sweaty and nervous, and I had no idea what was going on.  If I wasn’t with Sully, I would think of all the horrible possibilities that could happen.  I would replay these scenarios in my head until I would end up in a crying ball on the couch.  What was wrong with me?  Everything was fine, but I just couldn’t figure out what was going on.  I was too scared to talk to anyone about it.  I have a job that keeps me in the public eye.  What if they thought I was crazy?  What would my family think?  I knew it wasn’t normal to need a gallon of Pepto just to go and get groceries.   I’d dealt with a mild form of anxiety all my life, but never like this.  This was different.

Right after Sully turned two, a friend a mine sat me down for a frank discussion.  Being a mental health practioner, she’d seen this before.  She told me that she wanted me to talk to my doctor.  I tried to blow her off, but she pushed further.  Then she said it, “I think you have PTSD.”

Umm… what?

I was stunned.  I wasn’t in the military and hadn’t been through a war.  How could I possibly have PTSD?  There had to be another explanation.

Even though I thought my friend was way off base, I decided to call my doctor.  After talking to my doctor and being referred to a therapist, it was confirmed; I had Post Traumatic Stress Disorder (PTSD). The diagnosis was hard to swallow.  I blamed myself for not being able to control my emotions and thoughts.  I felt crazy.

Then, I started talking to other parents who’d been through the same or similar situations.  It was during these conversations that I realized that I wasn’t alone.  All these other parents had feelings like I did.  Though none of us had been deployed to a warzone, we were on the frontlines of our own; battling for our children’s lives. We’d waged war against catastrophic medical conditions that threatened to kill our children; and sadly, some of those medical conditions took the lives of some sweet warriors.

With a newly restored hope, I decided to talk more about PTSD and mental health.  There is such a stigma surrounding mental health issues.  The world is judgmental, that’s a fact, but we cannot stand silent in battle alone.  We need to talk about it.  We need to let the masses know that this is a real struggle that stems from healing wounds.  Seeing your child hooked up to 20 IV racks, with chest tubes, and a ventilator, is not something you can easily get over.  When you face the mortality of your child, you change. It is something that rocks you to the very core of your being.

The biggest thing I’ve learned since my diagnosis is self-care.  I can’t be the mom Sully needs unless I take care of myself.  Admitting you need help can be tough for people, but it is a necessity.  You can’t do this alone. Do not be ashamed.  We are in this together.

 

I’m happy to report that Sully is almost 6 years old now.  He is starting kindergarten in the fall. He’s happy, healthy, and the joy of our lives.  As for me, I’ve learned tips and tricks to manage my anxiety and panic.  Don’t get me wrong, I’m not perfect.  There are still times that leave me in a nervous mess, reaching for my inhaler.  But those times are few and far between. Every day I choose to take care of myself and not let PTSD control me.

 

 

 

 

 

Courtney Kile hails from Duluth, MN.  She is the mom to an amazing CHD warrior named Sully and wife to Robert.  Courtney and her husband run Project Heart to Heart, a Minnesota based non-profit serving families who have children born with Congenital Heart Defects. She is a paralegal by trade and uses her skills to help CHD families.

PCHA: At the Heart with Melanie

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Melanie Toth, our State Chapter Coordinator.

 
What do you love most about working for PCHA?
What I love most about working for PCHA is that everyone really works as a team! Even when we have different ideas, thoughts, or opinions, we always work together to do what’s best for patients, families, and the organization.
What do you think makes PCHA different from other CHD organizations?
PCHA consistently grows with the needs of the heart community. Our entire board, staff, and volunteer base is run by a collective community of heart parents, heart patients, bereaved families, and medical providers with one goal, to help Conquer CHD!
How does your experience with CHD help you relate to the families PCHA serves?
My experience with CHD helps me relate to the heart families in that they know the information and support I share comes from the heart. One quote I love:
“People don’t care how much you know until they know how much you care.” -Theodore Roosevelt.
I try my very best to show heart families how much I truly care by providing knowledge and support, because I wish I had more of both when we were first diagnosed.
How much about CHD did you know before you had Luke?
Before Luke was born and diagnosed with CHD, I knew nothing about it. I didn’t know it was the most common birth defect or that it affected 1 in 100 newborns. One of the things I love most about PCHA is that I am constantly gaining knowledge from CHD families and medical providers.
You’re passionate about supporting patients and families and meeting them where they are at, why is this so important?

It’s so important to me to support all heart families and meet them where they are in their journey, because this heart journey is always changing. I feel passionately that every heart family, no matter where they come from, should have a voice and know their journey can make a difference.
As PCHA’s State Chapter Coordinator, how does the state chapter structure help support families?

Our PCHA State Chapters  offer so much! In addition to the support and care package programs in our local communities, we empower the heart community with knowledge, through the resources and tools we provide. We give them a voice to advocate and share their stories, and we give them hope.

If you could be any animal in the world, what animal would you be and why?
If I could be any animal, I’d want to be a seahorse! The ocean and water have always been my favorite place for relaxation. Seahorses are so beautiful and unique. (I really wanted to say a mermaid but apparently they aren’t real)

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PCHA: At the Heart with Jess

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Jessica Chenevert, our Marketing Coordinator.

 

 

What do you love most about working for PCHA?
I love being a part of something that really makes a difference. I get to be a part of shaping the future landscape of CHD. I get to work with people that I admire and inspire me every day. Because of our shared experiences, our work culture isn’t like a typical 9-5 job. We’re a family.
What do you think makes PCHA different from other CHD organizations?
We are a one stop shop for all things CHD.
PCHA is the only CHD organization that provides invaluable resources, offers support to families throughout the lifespan, and advocates on a national level.

How does your experience with CHD help you relate to the families PCHA serves?
When I had my son Barrett, we didn’t know there was anything wrong with his heart. We felt so blindsided after a normal healthy pregnancy. It felt like I was thrown head first out of an airplane, spinning in a downward spiral, unable to catch my breath, and helpless to do anything but fall. I think that trauma is very real for so many CHD families out there, and the fact that PCHA is made up of families who have been where they are is crucial, in order for us to effectively fight for and support those families. We’ve slept in those hospital chairs, we’ve made those life or death decisions, we’ve struggled to pay the bills, we’ve lost our insurance coverage, we’ve celebrated every little victory, and we’ve been inspired by the families who came before us.
How did you discover and come to work for PCHA?
I found PCHA at my son’s bedside, while he was inpatient in 2014. Shortly there after, I saw they had a legislative conference in Washington D.C., where families are able to share their stories with congress. I initially disregarded it as something interesting but that I couldn’t do. Then, I saw it again, and again, until I said to my husband, “I think I want to do that, I think I can.” So I organized a T-shirt booster for “Team Barrett” shirts and raised enough money to pay my way to the 2015 conference. I got bit hard by the advocacy bug, fell in love with PCHA, and emailed Amy the following week to see what  I could do to be more involved. I volunteered for the next 3 years and eventually officially made it on staff.
How has your involvement in PCHA impacted your perspective on your journey with CHD?

I am constantly learning new things all the time. The opportunity to be involved in national conversations with other parents, patients, providers, and government officials has opened my eyes to what it really means for patients and families to walk this road, and it allows me to better serve them. It’s also opened my eyes to what it means for my family, as we continue down this lifelong path, from the neurodevelopmental consequences my son faces and the tools he needs to be successful in every aspect of his life, to transition into an independent adult responsible for his own care. 
As PCHA’s Marketing Coordinator, you’re on the front lines interacting with families every day. What is your favorite tagline PCHA uses and what makes it so meaningful?

My absolute favorite tagline we use is “Together, we are Conquering CHD!” It speaks volumes to me because you can interpret it however it to applies to you.
I am Conquering CHD every day as a patient or parent of a child with complex medical needs.
My child is Conquering CHD by continuing to grow, learn, and survive.
Our family and friends are Conquering CHD through their endless love and support for us.
Too many of my friends are Conquering CHD by simply waking up every day without the children they lost to this disease and carrying on their legacy and living their life for those children.
The dedicated and passionate CHD providers are Conquering CHD through their love and commitment to their work and CHD families.
PCHA is Conquering CHD through education, support, research, and awareness.
Together, we are Conquering CHD!

If you won $20 million dollars in the lottery, what would you do with the money?
If I won the lottery I would be speechless for the first time in my entire life! Besides the practical stuff like paying off any debts and putting a portion into savings, I would do a couple of fun things! Firstly, I would donate to my favorite charity: PCHA! Second, I would donate to the Heart Clinic and the CVCC unit of Children’s Minnesota, where my son receives care. Then, I would love to take a vacation, travel around the globe with my husband and son, visiting as many places as we can. Nolan and I have both been to Australia (separately), we would love to go back together. I also want to visit Sweden, specifically the town where my great great great grandfather lived before journeying to America in 1885 to found Lutsen, Minnesota.

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PCHA: At the Heart with David

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with David Kasnic, our Executive Director and Co-founder of PCHA.

 
What do you love most about working for PCHA?
Helping those people that are going through the same situations that we have been through. As patients, parents, and family members, we can share our own experiences and offer opportunities to educate, connect, and potentially advocate for those living with CHD. Also, the people I work with are the most passionate and dedicated people I have come across in my career. Our culture is amazing.
What do you think makes PCHA different from other CHD organizations?
As a grassroots organization, we have all experienced CHD in our personal lives. It’s not something we can go home and forget about for the night, we live it with our children, friends, family members and people we meet. We are doing this because we know we can make a positive impact on the lives of these CHD patients, parents and family members. It’s not just a job for us, it’s our reality. If we can’t show value or impact on a particular program, we won’t do it.
How does your experience with CHD help you relate to the families PCHA serves?
As stated above, it’s something we live with and have gone through. It gives us “membership” into a tribe of people that realize we understand and have gone from the dark places of CHD to hope and positivity. Telling someone you understand what they have gone through is one thing (i.e. empathy), but actually experiencing it for yourself is another. None of us chose CHD, but we are bound and determined to fight this disease for the sake of our children, friends, and family.
Five years ago, you saw a gap in advocacy for CHD and had an idea, and along with Amy, started PCHA. How does it feel to see how far that idea has come?
It’s pretty amazing to see the organization grow but, more importantly, to see how many others have joined us because they saw there was so much more to do too. We didn’t realize that we would need to grow into education and support as well. Our motto is that if there is a need, and no one is filling that need, we will look at filling it and executing it quickly. There are 40,000 new patients born into this world every year. We cannot wait to get these programs out there, so others can benefit from our experience and knowledge.
How do your experiences as a heart dad drive your decision making as an executive director of a CHD organization?

First of all, it’s not just about my child. If I only made decisions related to my daughter, I wouldn’t be doing this for the right reason. It’s about all those people out there living with CHD or those who are about to face CHD. Second, I feel like PCHA is a place where I can bring my passion for CHD (because of my daughter) and my business experience together for a very powerful organization that fights for everyone with CHD. All the people we have involved have a true passion for CHD and a need to give back.
How do you hope PCHA will impact Piper’s future? Do you hope to empower her to advocate for herself with regard to her care?
My hope is that Piper, or any other person living with CHD, can find the resources she needs in PCHA.  There is no cure for CHD, so it’s something she is going to live with the rest of her life. My job as a parent is to teach her to advocate for her health and to stay in care, with a qualified, congenital cardiologist. PCHA should be a place she turns to when looking for information about work place issues, pregnancy issues, insurance issues, etc.

What is your favorite genre of music and why?
My favorite is Metal. My favorite band is Metallica. It started when I was a kid, with buying my first Kiss album. I was around 9. I just love the driving beat and powerful music behind it.

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PCHA: At the Heart with Amy

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Amy Basken, our Director of Programs and Co-founder of PCHA.

 
What do you love most about working for PCHA?
That it is never “a job.” I feel like everything I do has meaning, and the people I work with help contribute to that meaning.
What do you think makes PCHA different from other CHD organizations?
PCHA has a unique culture that is evident in everything it does. I think it can be summed up with the word “Empowering.” Not only does PCHA develop tangible tools and resources but it also generates a palpable positive energy that inspires and motivates.
How does your experience with CHD help you relate to the families PCHA serves?
Sometimes I feel really guilty that my son is doing so well. But, having experienced time in the hospital with him, I vividly remember the families who had been there for months, and those that left the hospital without their child. While I’m no longer in the day-to-day throes of CHD, I try to tap into that empathy to keep me going. I try hard to stay connected with people in all stages of the journey so I can continue to learn about how the CHD community is constantly evolving. I’m always learning!
With so much to be done in the CHD world, how do you prioritize where to start?
At PCHA, we spend a lot of time listening. Listening to families and what their needs are, and to medical experts as to how we can take those needs and make a difference. We look at the whole landscape and see who else might be already working to address a need, and where we might provide the best impact. Still, there is always the struggle of wanting to do more. Every time you successfully open a door, you see so many new doors to open!
If it wasn’t for your journey and role at PCHA, could you see yourself as a nationally recognized speaker, national public policy contributor, and advocacy superstar?
No! I’m just a mom from a small town in Wisconsin. Although, I do like to talk a lot. It is a real privilege to celebrate the work of PCHA as others see our real value, giving us opportunities to have a seat at the table, or time at the podium, to reflect and represent the patients and parents that are the life-blood of PCHA, and deserve to be at the center of these game changing conversations.
You and PCHA were instrumental in the passage of the Congenital Heart Futures Reauthorization Act that awards $50 million dollars to CHD research over the next 5 years, how does it feel knowing you’ve helped change the landscape of CHD for patients and families for years to come?
This is certainly a collective win. Advocacy is all about building relationships and moving people to action. PCHA was founded on this principle and was an excellent vehicle to move this issue forward. I am so proud of all the people who worked together to share their story and inspire our federal policy makers to make game-changing decisions that will benefit the CHD community for generations.

What would people be surprised to know about you?
I loathe mayonnaise and mustard. All condiments, really. I’m more likely to starve than eat anything with obvious condiments.

 

 

 

We are #CHDAware – Heart Month 2019

Heart Month has arrived! Here are a few key ways to help us raise awareness throughout heart month and all year long!

Participate in our Social Media campaign! 

Use your social media talents to shine and join the #CHDAware social media storm

February 7-14, the entire community comes together to help others understand how common congenital heart defects are, the need for research, and access to quality care. At PCHA, our programs serve to educate patients, parents, physicians, and lawmakers spreading awareness all year long, but we love to join in the February Fun! During CHD Awareness Week, we strive to inform those who may not be as familiar with CHD and our organization.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by liking and sharing our statistic infographics. We have a lot to share this year, so look out for these graphics all month long!

Make it personal – Using the hashtag #CHDAware, add details about your story, your experience, and be sure to Include a message about an aspect of CHD that matters to you. Examples: the need for research funding, advocacy or support for fellow families. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can turn awareness into action. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Facebook frame – As patients, parents, bereaved families, and providers we are all #CHDAware. Show your support for PCHA and spread CHD Awareness by adding this effect to your Facebook profile picture!

Invite others – we can do the work for you – simply guide them to our social media pages.  Ask them to like and follow us. We’ll make sure they STAY engaged! Click on an icon to find us!

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Month-long #CHDAware Challenge 

Join the fun: become a fundraiser and earn great prizes!

Help us raise awareness and support patients and families, all while earning awesome PCHA swag!!

Our Goal: We surpassed our initial goal $25,000 in the first 10 days of the month so we DOUBLED IT! With just a couple days left of Heart Month we are 90% of the way to raising $50,000 to support our essential programs: offering care packages, hospital training’s, patient and family resources, and so much more.

CHECK HERE FOR UPDATES: Learn about the contest, check deadlines, view prizes and updates on winners for each challenge.


Great Shirt, Great Cause!

Our newly updated heart infographic campaign has ended but because of your amazing support we were able to sell 159 shirts to raise $1400 to directly impact the lives of CHD patients and families through our programs like public reporting, the guided questions tool, care packages, and the legislative conference.

Shirts will be delivered 2-3 weeks AFTER the campaign closes (Feb.14th).

Check out the great selection of styles and colors!


Gear Up to support heart families!

Check out our online store for #ConqueringCHD apparel, bags, buttons, and morel!

Don’t forget to pick up your very own Echo the Owl! The heart on Echo’s chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

Order your very own Echo the Owl today, and we will also add one to a care package to be given to someone hospitalized due to CHD. Echo can be Purchased in our online store HERE!


At the Heart with PCHA

PCHA was founded by everyday people, joining forces for change. Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special.

So far, we’ve heard from Amy, David, and Jess. Find their blogs below.

Amy, Director of Programs
David, Executive Director
Jess, Marketing Coordinator
Melanie Toth, State Chapter Coordinator


Lace up your shoes & put some heart in your step!

Registration is now open to participate in the 2019 Heart and Sole 5K Run/Walk to be held at Miller Park, the home of the Milwaukee Brewers, on June 22. Hosted by local families, all proceeds will benefit PCHA. Together, we are #conqueringCHD! Check out the Heart and Sole 5k Run/Walk facebook page to stay updated! Register today at: www.mkeheartrun.com

 



Let your artistic skills shine

Break out the crayons, markers, colored pencils, or paint! Add color to the page, and bring Echo to life with our printable coloring page that the whole family can color as they wish. Or bring Echo to school to color with friends, and teach them about CHD with our new Echo fact coloring page!

Want your finished masterpieces to be featured on our Instagram? Great! Just upload a picture of your finished coloring page and submit it to Echo at Echo@conqueringchd.org

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.