Faith Brackett's CHD Journey - HLHS

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Faith Brackett's CHD Journey - HLHS My journey living with Complex CHD - HLHS.

8x OHS - 1st Bi-Vent

Great day to take a little walk for a great cause supporting It's My Heart - New England’s annual Keep The Beat Walk. If...
30/06/2024

Great day to take a little walk for a great cause supporting It's My Heart - New England’s annual Keep The Beat Walk.

If you are in the New England area, this organization provides such great support and community engagement opportunities within the CHD community ❤️

Today I had the honor of sharing my story at the Boston Children’s Hospital Department Heads Meeting and was able to spe...
27/06/2024

Today I had the honor of sharing my story at the Boston Children’s Hospital Department Heads Meeting and was able to speak as the “Patti B. Moment”.

The Patti B moment was created in honor of a B*H nurse and leader highlighting the work of individuals or teams that embrace patient-and-family-centered care and impact the patient and family experience.

Boston Children’s Hospital is the epitome of patient and family centered care it was a privilege to have the opportunity to talk to each department head today and honor their important piece of the puzzle. From the janitorial staff, to the kitchen staff, the administration, the researchers, the nurses and doctors, and everyone in between, I always know that when I walk into the doors of Boston Children’s Hospital, I will be greeted with kindness, understanding, and truly set up for success.

As I said in my speech, thank you hardly feels big enough to the individuals who truly gave me my life back, but I will forever be grateful.

Thank you so much for having me and for the opportunity!

The Benderson Family Heart Center at Boston Children’s Hospital

My sweet angel is EIGHTEEN! Happiest of birthdays to KC🎉🥰
01/06/2024

My sweet angel is EIGHTEEN! Happiest of birthdays to KC🎉🥰

Here in Maine, summers are absolutely beautiful! Every week, my puppy Blaire and I plan to take a trip somewhere coastal...
25/05/2024

Here in Maine, summers are absolutely beautiful! Every week, my puppy Blaire and I plan to take a trip somewhere coastal and visit as many places as we can! She absolutely loves the water!

What do you like to do in the summer? ☀️

Happy Thursday everyone!! Lots of new faces, so thankful to have you join the community! If anyone has any questions/top...
23/05/2024

Happy Thursday everyone!! Lots of new faces, so thankful to have you join the community! If anyone has any questions/topics you’d like me to talk about, please leave a comment🩵

American Heart Association You’re The Cure 🫀Whether it is congenital heart disease or acquired heart disease, I think we...
07/05/2024

American Heart Association You’re The Cure 🫀

Whether it is congenital heart disease or acquired heart disease, I think we all know someone who has been impacted by heart disease and there is a lot at stake when it comes to the #1 birth defect (CHD) and the #1 killer of Americans (CVD). Why? Because losing one person to heart disease is far too many.

The AHA works relentlessly to be a force for a world of longer and healthier lives and YOU can help make a difference.

The AHA has provided several action alerts where they have given an email template for YOU to be the cure.
🫀Action 1: Access to AEDs in elementary school. Heart Disease and Cardiac Arrest can affect anyone at any age and it’s so important to have the necessary resources if an emergency were to occur.
🫀Action 2: Keeping school meals healthy. You know me. I am ALL about helping people learn how to eat a heart healthy diet but for many kiddos in the US as well school meals are one of the healthiest meals the child has access to.

I worked with Maine Congress members and sent both of my emails for these action items and challenge you to do so as well. Always remember.. your voice can make an IMPACT! 🫶🏻

www.yourethecure.org

Sharing a little day in my life in this weeks video 💕DAY IN MY LIFE VLOG | errands, pesto recipe, bts of filming & MORE!
28/04/2024

Sharing a little day in my life in this weeks video 💕

DAY IN MY LIFE VLOG | errands, pesto recipe, bts of filming & MORE!

DAY IN MY LIFE VLOG | errands, pesto recipe, bts of filming & MORE!In this video, I am taking you along in a day in my life. We run errands, make pesto, and ...

22/04/2024
19/04/2024
14/04/2024

Raise your hand in the comments🙋🏻‍♀️🙋🏻‍♀️🙋🏻‍♀️ if you’ve ever been stared at / spoken to for parking in the handicapped parking zone because someone thought that you shouldn’t be parking there. I know that I definitely have!!

Growing up, we always had a handicapped placard and then when I got my license, I got the disability plate. There have been so many times people have stared or even said something like “you shouldn’t be parking there” or in more aggressive circumstances have given me the bird, swore at me, and pounded on my window angry at me because they thought I was stealing a spot.

When people have said something and I am alone, I keep walking and ignore them because I don’t want any sort of conflict. In all honestly as well, if I have noticed that people are staring / look like they are going to say something, there have been times I have faked a limp walking inside of the store in hopes that someone doesn’t say something. (However, it’s probably very clear it’s fake because as soon as I get in the store I walk normal lol). When I have been with friends, they have simply said “she’s had eight heart surgeries” and we keep walking. Usually that pipes people down and some have apologized.

Invisible disability is just as real as visible disability and for me, parking in handicapped parking (or as I like to call it VIP Parking), I am able to not waste the energy walking across the parking lot, and save that for going into whatever place I am heading. Every ounce of energy counts when you have CHD. Leading with kindness and understanding in every situation is crucial because you truly never know what someone is dealing with.

One of the things that my mom did when I was younger was create little cards with a few CHD facts that she would cut out and give to people if they said something to her. I have a version of those listed on the resources page of my website if you’d like to download and print them out. 💌 www.faithbrackett.com

‼️Let me know in the comments if you have had a similar experience when it comes to handicapped parking. 🫀

New video sharing what I eat in a day with CHD❤️WHAT I EAT IN A DAY with heart disease | healthy, low sodium meal ideas
14/04/2024

New video sharing what I eat in a day with CHD❤️

WHAT I EAT IN A DAY with heart disease | healthy, low sodium meal ideas

WHAT I EAT IN A DAY with heart disease | healthy, low sodium meal ideasIn this video, I am taking you along in what I eat in a day with heart disease. You wi...

New video! Been wanting to get more into YouTube to show day to day life ❤️💙EASTER VLOG | Prep with me, Charcuterie Boar...
07/04/2024

New video! Been wanting to get more into YouTube to show day to day life ❤️💙

EASTER VLOG | Prep with me, Charcuterie Board, Dog Easter Baskets, & MORE

EASTER VLOG | Prep with me, Charcuterie Board, Dog Easter Baskets, & MORE In this video, I am taking you along in my preparation process for Easter! I share ...

So thankful for all of the work that the The Children's Heart Foundation does and the impact they are making on the live...
03/04/2024

So thankful for all of the work that the The Children's Heart Foundation does and the impact they are making on the lives of those living with CHD

Honored to be featured in this month’s It's My Heart - New England newsletter! ❤️
31/03/2024

Honored to be featured in this month’s It's My Heart - New England newsletter! ❤️

We are in family and walk mode! Volume 13 | Issue 3 | March 2024 Registration for our 2024 Keep the Beat CHD Awareness Walk and Family Picnic is open! Register your team and your walkers today!! walk.

Questions / Topics you’d like me to share a bit about??
29/03/2024

Questions / Topics you’d like me to share a bit about??

Such an incredible event!
29/03/2024

Such an incredible event!

100 years of the  and 20 years of the  Movement 🫀For decades the AHA has been working relentlessly for a world full of l...
28/03/2024

100 years of the and 20 years of the Movement 🫀

For decades the AHA has been working relentlessly for a world full of longer, healthier lives. Yesterday, I was honored to be invited to attend the GoRed Luncheon. It was in incredibly educational and empowering day. We were able to hear from experts in the field, survivor speakers, and celebrate all of the work that has been done, while recognizing how far we have left to go, because losing one life is too many.

Thank you to everyone who attended, donated, and to all of the people who made this inspiring event happen. Together, we were able to raise thousands to fund local heart disease research and advocacy programs. YOUR life is WHY! ❤️

26/03/2024

So excited to partner alongside the American Heart Association - Maine 🙂

CHD and Diet: One of the biggest things that I do that I believe helps me manage my CHD day to day is eating as heart he...
12/03/2024

CHD and Diet:

One of the biggest things that I do that I believe helps me manage my CHD day to day is eating as heart healthy as possible.

One conference that I attended at the American Heart Association one year recommended that the Mediterranean diet is the best for general heart health so I work to follow that for the most part.

In addition, one of the biggest things diet wise when CHD comes into play is managing my sodium levels. The older I get the more salt sensitive I get. When I have a lot of salt, I retain a lot of fluid which obviously puts more stress on my heart. Day to day, I try to limit my salt as MUCH as possible and often make just about everything homemade, pickles, salad dressing, sauces, breads, desserts, you name it. You’d be surprised if you looked at the back of a salad bottle dressing or a pickle jar.

I love being able to share my recipes with you guys, but also would love to hear the types of foods that you eat that you might be looking for a heart healthy version for, if you need quick meal prepping tips, or if there are specific school type snacks/lunches that you are looking for.

If you scroll back a bit on this page I have a few recipes shared, but keep most of my recipes on my YouTube. https://youtube.com/playlist?list=PL3g9_VOI2Q5_eLeNulcukYzF-CdrefNSG&si=lY3uVST6pISP4HGC

Happy International Women’s Day ❤️
09/03/2024

Happy International Women’s Day ❤️

Today is , a day we come together to honor and celebrate all women and their achievements.❤

Please join us and tell us about women in your life that you are celebrating today 👇
💝 We celebrate your bravery, and !
❣️️ We celebrate your tenacity, scientists and researchers!
❤️‍🩹 We celebrate your kindness, nurses and doctors!

29/02/2024

This heart month and every month we thank those in the medical field who work hard each and every day to care for those living with CHD.

We invite you to share in the comments about a care team member who made a difference in your life.

Little throwback to when I had the opportunity to share my story on the American Heart Association Support Network. This...
29/02/2024

Little throwback to when I had the opportunity to share my story on the American Heart Association Support Network.

This forum is such an incredible resource to let others who have faced all types of heart disease and stroke know that they are not alone.

Their mission in this forum is to empower those impacted by heart disease and stroke letting them know that: “You have the power to overcome heart or stroke challenges. Meet people who are on the same path as you. Benefit from their wisdom and share your own. Explore how to make your experience smoother and easier to manage.”

So thankful for the opportunity to share my story and if you’d like to read more, I encourage you to check out the Network!

https://supportnetwork.heart.org/s/blog-article/a1h4T000000YA9aQAG/faith-brackett-2019-maine-go-red-spokeswoman-childrens-heart-foundation

Got an exciting package in the mail today! Can’t wait for a fun evening Thursday with HeartWorks!💙
27/02/2024

Got an exciting package in the mail today! Can’t wait for a fun evening Thursday with HeartWorks!💙

🐝Shine bright and   🐝1 in 100 children are born each year with congenital heart disease making it the most common birth ...
18/02/2024

🐝Shine bright and 🐝

1 in 100 children are born each year with congenital heart disease making it the most common birth defect. 50% of those children are diagnosed with Down Syndrome. Despite its prevalence, CHD is one of the least funded diseases in terms of research.

In honor of their sweet daughter, Sadie Brett, The Brett Boyer Foundation jumped in the ring to help battle heart disease by funding some of the most promising research that will impact so many shining sweet Brett’s bright light for a lifetime to come. 💛🐝

Thank you for being such a light to so many 🫶🏻

15/02/2024
Forever thankful for the doctors and staff at Boston Children’s Hospital. Truly would not be here today without them! ❤️...
15/02/2024

Forever thankful for the doctors and staff at Boston Children’s Hospital. Truly would not be here today without them! ❤️ So thankful for the opportunity to share my story.

Twenty years ago, Faith was among the first children to have the innovative biventricular repair to treat complex heart defects.

15/02/2024

So excited to add two new resources to my website. I worked with friend and heart mom Kat Hansen to create two printables we hope will be helpful. One is coping tips for adults with CHD and the other is coping tips for children with CHD and how parents can help their kiddos.

Find these resources here: https://www.faithbrackett.com/resources

My hobby for 2024 you ask?? Trying to successfully make a loaf of sourdough bread from starter😂Join the journey:
12/02/2024

My hobby for 2024 you ask?? Trying to successfully make a loaf of sourdough bread from starter😂

Join the journey:

Check out Faith Brackett's video.

So thankful to work alongside It's My Heart - New England! I began volunteering with them in 2020 when I spoke at their ...
11/02/2024

So thankful to work alongside It's My Heart - New England! I began volunteering with them in 2020 when I spoke at their walk and started as the social media coordinator in late 2022. If you are a heart family in New England, check out the page because they provide so many incredible resources and community support to families❤️💙

Meet our incredible IMHNE team! We’re so thankful for all of the volunteers that help make all we do possible!

Are you interested in joining the team? We have openings for ACHD support as well as Bereavement Support. For more info e-mail [email protected]

🫀BiVent Q&A🫀What surgeries did you have before the Bi-V?  I had a Damus K. Stanzel, the Norwood, Glenn, and a Valvulopla...
09/02/2024

🫀BiVent Q&A🫀

What surgeries did you have before the Bi-V?
I had a Damus K. Stanzel, the Norwood, Glenn, and a Valvuloplasty?

How old were you when you had the Bi-V?
I was 7.

Why didn’t you have the Fontan or get a transplant?
Keep in mind, this was all happening in the early 2000s, medical advancements have come a long long way. At the time, there was only one type of Fontan procedure, and I was not a candidate for it because my pressures were too high. In addition, I was not a candidate for transplant at the time.

How did the Bi-Vent come about?
My cardiologist up here in Maine presented me several times down to Boston. Dr. del Nido picked up my case and explained a procedure that “hadn’t really been done before” but thought that it would work for me and believed that he could do it. I am so thankful that he was right and that procedure is now known as the Bi-Ventricular Repair

Did you have the full switch or the 1.5?
I had the full switch. Back in the day they were not doing the 1.5 switch. The team has come a long way in advancing the procedure and helping so many more kiddos.

Has your left side grown? Is your heart set up like a “normal” heart now?
While my ventricles are still not symmetrical leaving me with an unbalanced AV Canal, my left side did grow/dilate some which is what originally made me a candidate for the Bi-Vent. The Bi-Vent, allowed for my hemodynamics to be set up the same as a 4 chambered heart.

Am I considered single ventricle?
Although I was born single ventricle, because of the Bi-V I now have four working chambers

Did you notice a change physically after the Bi-V?
Mind you, I was 7 when I received the Bi-Vent so this is remembering everything from a kid’s perspective… But what the Bi-Vent gave me was oxygen, and my normal 02 Sats sit at 99%. With that I was able to get around better than I was before and just have fun being a kid. I still have limits, but that surgery truly saved and changed my life forever.

Have you had any procedures since?
Yes, my valves have been keeping everyone on their toes. In 8th grade I had a myomectomy to remove some sub aortic stenosis and then just after my senior year of high school I had back to back open heart surgeries to replace my tricuspid and my mitral valve.

I am truly so very thankful for this procedure and cannot thank all of my medical team enough for finding an option when we were told there were no options.

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