I Heart CHD Babies!


Jace Alan Hall, Born 12/08/2012, Tetralogy of Fallot and Pulmonary Atresia

Stella, Born 02-02-07, Coarctation of the Aorta Kaylin, VSD & ASD Bryson, Born 09-17-09, Coarctation of the Aorta, Transposition of the Great Arteries, VSD & ASD
Briston, Born 10-21-04, Truncus Arteriosis & DiGeorge Syndrome


Tyler Matthew Anderson, Born 01-11-07, TGA & COA & VSD


Logan Stone Schulz, Born 03-30-10, Tetralogy of Fallot & VSD

Charlotte Kowanetz, Born 09-29-10, Interrupted Aortic Arch, VSD and DiGeorge Syndrome


Austin James, Born 04-10-07, HLHS, Pulmonary Atresia & VSD

Oliver, Born 08-14-08, HLHS

Margaret Blakeney Farr, Born 12-04-09, Transposition of the Great Arteries

Audrina Soleil, Born 10-3-10, Truncus Arteriosus (type 1)

Macie Bridges, Born 01-20-2010, ASD & VSD & PDA

Amelia Isabel Hine, Born 09-29-06
HRHS, Tricuspid Atresia, ASD, VSD, Pulmonary stenosis, Pulmonary obstruction, Mitral regurgitation & Aortic regurgitation

Emy Mayes, Born 03-12-08, HLHS

Asher Sloan Griffin, Born 10-27-10, Tetralogy of Fallot with Pulmonary Atresia

Ashton Thomas Roessler, Born 03-09-10, Pulmonary Atresia with VSD

Kinley Tyler, Born 12-29-08, Left Ventricular Fibroma and VSD

Zoe Madison Lihn, Born 05-11-10, HLHS

Liam Sebastian Burns, Born 08-05-10, Earned angel wings 08-17-10, HRHS with Tricuspid Atresia and an absent Pulmonary Valve

Karly Boyda, Born 07-29-04, Aortic Stenosis, Bicuspid Aortic Valve, Subaortic Stenosis, Coarctation for the Aorta

Serena Lesley Cisneros, Born 08-25-09, Earned angel wings 03-15-10, Hypertrophy Cardiomyopathy
Emma Haeley G., Born 02-22-10, Tetralogy of Fallot
Gracie Renee Tice Mcnally, Born 03-30-10, ASD, VSD (alot of swiss cheese holes), Unbalanced ASVD, severe Tricuspid Valve Insufficiency & Pulmonary Stenosis

Jayden Chase Taylor, Born 01-21-10, HLHS

Luke, Born 01-25-10, Transposition of the Great Arteries, Pulmonary Stenosis, Ventricular Septal Defect, and a G6PD deficiency

Sutton Kole, Born 04-12-10, Hypoplastic Aortic Arch

Marlee Claire Hardman, Born 08-11-08, Interrupted Aortic Arch and VSD

Bailey Fay, Born 03-09-06, L-TGA, VSD, Pulmonary Atresia and MAPCAs


Deaken Scot Wright, Born 03-17-10, Earned angel wings 04-12-10, Heterotaxy, AV canal deficit, total anomalous pulmonary venous return, dextrocardia w/ left SVC, & pulmonary atresia

Claire Capri Goode, Born 08-30-08, Shone's Complex

Charlie Elizabeth Collado, Born 12/05/08, Earned angel wings 02/16/09, Truncus Arteriosus

Brooklyn Anne McGough, Born 12-09-02, Shone's Complex

Braden, Born 12-17-09,
Coarctation of Aorta, Hypoplastic Aortic Arch, ASD, Multiple pinhole VSDs, fluid on brain, cystic hygroma, probable noonans syndrome and lung damage due to aspiration

Nathan Thomas Buck, Born 11-09-07, Hypoplastic Right Heart, Pulmonary Stenosis, VSD, single ventricle

Madalyn, Born 05-06-09, Double Outlet Right Ventricle, Large VSD, common AV valve, mitral atresia and hypoplastic aortic arch

Melissa, Born 1981, Diagnosed with bicuspid aortic valve, aortic stenosis, and aortic regurgitation in 2001

Gabriella, Born 01-14-05, Restrictive Cardiomyopathy, Myocardial Bridging, PFO, Leaky Mitral Valve

Zoe Heyding, Born 12-28-10, Multiple VSDs and an ASD

Gunner Wesley, Born 08-31-09, Truncus Arteriosus with ASD/VSD


Sophia Walsh, Born 05-03-09, Tetralogy of Fallot, Double Outlet Right Ventricle & Pulmonary Stenosis

William, Born 11-22-04, Pulmonary Atresia, major VSD and MAPCAs

Madelyn Angel Louise, Born 08-06-09, HLHS & TAPVR

Jace Rylan Cecil, Born 08-14-09, Tetralogy of Fallot with Pulmonary Atresia

Michelle has four kids, 3 of which have hereditary heart defects, including her husband. Her 14yr old son has a VSD, ASD, BAV, 2nd and 3rd degree progressive heartblock and pacemaker. Her 11yr old daughter has 2nd degree progressive heartblock, but no pacer yet. Her 3yr old has BAV and 1st degree progressive heartblock, but no pacer yet.

Lillian Grace, Born 01-18-08. Small ASD, 8mm VSD, PDA

Simon Lev Fitch-Jenett, Born 04-09-08, Idiopathic Dilated Cardiomyopathy

Aharon Marcus, Born 02-13-10, DILV, Dextrocardia, PS, TGA (congenitally corrected) and Right Hypoplastic Ventricle

Ellie, Born 04-22-01, Transposition of the Great Arteries


Nevaeh, Born 09-17-06, Tetralogy of Fallot with Pulmonary Atresia, PFO, Right Aortic Arch and Pulmonary Arterial Hypertension


Ava Cook, Born 02-01-10, Transposition of the Great Arteries


Jake Waddle, Born 10-13-05, TAPVR

Olive Jai, Born 05-05-09, Tetralogy of Fallot and Pulmonary Atresia

Mary Clare, Born 06-27-07, HLHS

Riley Nicole Brock, Born 12-30-08, Transposition of the Great Arteries

Andrew Christian Sondgeroth, Born 05-08-08, HLHS

Reese Lara Griffith, Born 07-24-08, Williams Syndrome and Supravalvar PS

Cora, Born 11-30-09, Earned angel wings 12-06-09, undiagnosed CHD

Madelyn, Born 08-18-06, Infracardiac TAPVR/ASD/PDA and LV Dialation


Emily, Born 06-20-05, Mitral Valve Prolapse, Mitral/Aortic/Pulmonic Valve Regurgitation, PFO still open



Brayden O'Malley, Born 10-02-08, TGA, VSD, ASD and Pulmonary Stenosis

Kaia Belle Urban, Born 05-30-09, Earned angel wings 07-02-09, Severe HLHS

After Kaia passed, her Mom Stephanie lost her job. She is now making a living doing children's (and some adult) fabric art in honor of Kaia and CHD Awareness. http://littleliondesigns.etsy.com/

Elizabeth Anne Wilson, Born 08-27-09, Tetralogy of Fallot and Trisomy 21

Tanesha Mae Ives, Born 05-31-09, Complete AVSD

Christopher Haddix, Born 07-18-08, HLHS

Rylee Kristen Konrad, Born 02-07-07, Tetralogy of Fallot, Coarctation of the Aorta, DORV, and Pacemaker. Rylee also had lung disease that required a
tracheostomy, which was removed 09/2008




Stephen Eric Bowman, Born 10-15-09, Earned angel wings 11-27-09, Pulmonary Atresia, DORV and Large VSD

Matthew Lee, Born 12-16-02, Aortic Stenosis, Mitral Valve tissue blockage in front of Aortic Valve, Valve leakage and calcification of Aortic Valve

Rachael Faught, 27 years old, TGA and VSD

Ava, Born 05-23-06, DiGeorge Syndrome, VSD, ASD, LVOTO, Interrupted Aortic Arch and Pacemaker - Stroke Survivor

Maverick, Born 09-12-08, Earned angel wings 02-24-09, TGA (Taussig-Bing variant), VSD, ASD

Hunter Drake Lubitz, Born 01-25-08, Vascular Ring, Right Aortic Arch, with anomalous origin of the left subclavian artery and the left-sided ligamentum arteriosum completed the full ring

Alyssa Roze, Born 11-13-09, Tetralogy of Fallot

Grace, Born 07-31-06, PDA, SV ASD, Secundum ASD and PAPVR

Ronnie Harper Spencer, Born 04-26-09, Interrupted Aortic Arch (type B), Aortic Stenosis, VSD, DiGeorge Syndrome

Eve Isley, Severe Mitral Valve Defect, Regurgitation, SVT, Enlarged Heart.


Her mommy Annamarie is a HUGE voice for CHD. Her website is http://1in100.org/

Maddie, Born 03-13-08, HRHS, Pulmonary Atresia w/IVS and Ebstein's Anomaly

Kylee, Born 06-18-09, Tetralogy of Fallot, Complete Common AV Canal Defect and Down Syndrome


Anika, Born 4-17-07, Single Ventricle, Dextrocardia, ASD, Pulmonary Valve Atresia, MAPCAs

Derrick Carter, Born 4-20-09, Single Ventricle, Dextrocardia, Pulmonary Atresia, Mitral Valve Stenosis, and Transposition of the Great Arteries

Tanner, Born 12-18-00, 2 VSDs, PDA, PFO and Club Foot

Lauren, 22yrs old, Tricuspid Atresia (aka HRHS/Single Ventricle)

Lilah Rae, Born 12-08-08, Tetralogy of Fallot with Pulmonary Atresia


Elijah "Eli" Schaffer, Born 12-06-05, L-TGA, PS, VSD, ASD, HRH

Sariah, Born 10-23-03, Mitral Valve Stenosis & artificial Mitral Valve

Lily, Born 07-15-07 and earned angel wings 08-21-08, HLHS, unbalanced translocation of chromosome 10 & 12, Dandy-Walker Syndrome, Mitrochondrial Disease



Abi Clayton, Born 12-13-02, Williams Syndrome-Supravalvular Aortic Stenosis, Mitral and Tricuspid Valve Insufficiency

Mackenzie, Born 02-19-09, Dilated Cardiomyopathy, Transplant 7-7-09

Sawyer "Zeb" Lyle, Born 03-02-07, Aortic Stenosis/Bicuspid Aortic Valve

Chloe Vanderlaan, Born February 2000, Partial A/V Canal Defect


Drew Brown, Born 05-30-08, Pulmonary Stenosis (Supravalvar and Valvar)

Olivia Spencer, Born 09-20-07, HLHS and Leaky Tricuspid Valve


Alex Miller, 18 years old, Single Ventricle, TGA and Pulmonary Stenosis

Tristan Micah Johnson, Born 01-21-08, ASD ostium primum w/cleft mitral valve

Jet Thompson, Born 08-26-08, Coarctation of the Aorta

Adam Matthew Stoddard, Born 06-27-05, TGA, VSD, PFO & Pulmonary Stenosis

Landon James Hoekstra, Born 02-20-09, Coarctation of the Aorta, TGA, VSD, ASD

Abigail McKenzie Swindell, Born 04-28-08, Coarctation of the Aorta & VSD

Dylon Smith, Born 09-14-05, Circumflex Aorta & Vascular Ring

Joshua Adamson, 5 years old,
Tricuspid Atresia, Pulmonary Atresia, and Hypoplastic Right Ventricle


Trista Faith DeBruler, Born 02-27-09, Tetralogy of Fallot

Bentley, Born 08-20-08, Tetralogy of Fallot

Hamilton Jordan Hammons
Born 11-18-02, Earned angel wings 11-08-08, Dextracardia and Single Ventricle

Logan Jacks, DORV, d-TGA, VSD, PS & Right Aortic Arch

Marcus Christopher Henry, Born 06-02-04, HLHS
Lenora Ahart, Born 10-02-03, Aortic Stenosis

Jack Fitzpatrick, Born 11-23-08, COA/PFO/VSD/ASD

Faith Janene, Born 04-14-07, Multiple VSDs & non-compaction of left ventricle

Corbin James Mellick, Born 06-06-08, Earned angel wings 07-27-08,
Transposition of the Great Arteries

Henry Bridges-Simpson, Born 12-05-08, TOF, Pulmonary Atresia & DiGeorge Syndrome


Memphis Wulfekahl, Born 06-13-07, Truncus Arteriosus


Phillip Smith, Born 11-15-06, Scimitar Syndrome

My CHD baby Chloe June, Born 11/04/08, Taussig-Bing (DORV, dTGA, VSD, ASD)


Regan Getman, Born 10-14-01, TGA



Noah Paul Tyson, Born 03-06-09, HLHS


Jordan Snyder, 3 yrs old, AV transitional canal, cleft mitral valve, and currently subaortic stenosis


Jack Robertson, Born 09-08-05, Earned angel wings 12-26-09, HLHS



Ethin RaiLuc Twigg, Born 01-09-09
Earned angel wings 06-27-09
HLHS
To purchase $2 Remember Ethin Raise Awareness Spread Hope Bracelets
email Jessica Twigg at chdhlhs09@yahoo.com

Keegan L., Born 09-26-96, TGA

His mom Ruth writes "His cardiologist claims that he now has the heart of an athlete, but we know as CHD mothers that there is always the possibility of that changing. I have raised Keegan in an unlimiting manner, not making his disability hinder him from trying any sport or physical activity that interests him. He is brave and strong, and truly a little fighter; thus the reason why I named him Keegan. He is well aware of his limitations and of his condition, but refuses to let it stop him from being a great and accomplished kid. May this give hope to those that have TGA babies, there is quality life after CHD."

27 comments:

  1. What beautiful, beautiful beautiful and amazing children :0) <3

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  2. Thank you for adding our Lil Heart!! He is our miracle and we Thank God every day for him!!! Ur site is great!!! Big HUGS!!
    Rhonda ~

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  3. All of our heart kids are incredible gifts. Sometimes I look at Tanner on his dirtbike and think back to when he was just out of open heart surgery, so tiny, so critical...And my eyes fill with tears. I never would have allowed myself the wish of seeing him grow and enjoy life like he does!
    Suzy
    Tanners mom

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  4. Amazing as I come on newly discovered sights, and I see several of our heart friends. We are a family, brought together by beautiful, strong, and loved children.
    Kim, mom to Will, Unbalanced AV Canal (complete AV canal and Tetrology of Fallot) Down Syndrome
    BT shunt, Bi-directional Glenn, Bi-ventricle repair

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  5. Thank you so much for having this website. As a recent parent of a CHD child it is wonderful to see the beautiful pictures and hear other's stories. It provides support to those families in need.
    - Alyssa's mom
    To hear or follow Alyssa's story feel free to visit our blog.
    Happymom4life.wordpress.com

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  6. i was shoocked to see PHACE syndrome mentioned on your blog! My daughter has it and it still seems so unknown to most drs so it was nice to see itmentioned here, thanks
    wyndi

    www.allthingsizzy.blogspot.com

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  7. Great post ~ I'll be sure to send in my picture and see if I can't get some big CHD kids to send in theirs as well ~

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  8. Thank you so much for posting my baby girl, Kaia. She helped raise awareness to thousands of people in her 34 day life. I'm so proud of all she did for awareness and all that she continues to do through me and the artwork she inspires.
    Stephanie

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  9. Hello Heart Parents.

    My Daughter Gabriella lives with EIF a type of CHD. My blog covers CHD Awareness.

    http://aprilspregnancyblog.blogspot.com/

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  10. I terminated my chd baby who was diagnosed with double outlet right ventrical, hypoplastic left ventricle and mitral valve atresia with coarctation of the aorta. I am terribly upset and depressed that I chose to tx. I now know there was a great big possibility he would have made it after reading all these miraclous stories. What I chose to do in my extreme sadness, shock is something that is undescribable and unimaginable and this will stay and taunt me til the day I die. I am sorry my baby, im sorry I didnt give you a chance and didnt listen to my heart. I wish I could go back in time and give you the chance you deserved. I AM SO SORRY MY BABY, MY BABY M. MOMMY DOES LOVE YOU SO VERY MUCH AND IT KILLS ME TO KNOW THAT I CHOSE TO END YOUR LIVE. I HOPE YOU CAN FORGIVE ME BECAUSE I CANT FORGIVE MYSELF. SORRY I LOVE YOU SO MUCH AND WISH I CAN HOLD YOU AND WATCH YOU GROW. I AM SO SO SORRY NOTHING I SAY CAN BRING YOU BACK TO MY ARMS AND FOR THIS LIFE WILL BE HARD FOR ME TIL THE DAY I DIE. LOVE YOU SWEET BABY, LOVE YOU SO MUCH.

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  11. Thanks for your pictures of these amazing strong children I am proud to say my child is a CHD survivor!
    My prayers are with the ones that have passed away<3

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  12. Dawn, Calgary, AlbertaAugust 12, 2010 at 4:40 PM

    MY son has had MANY different challenges in his 15 years and today was just another eye opener! He was seen by an immunologist and she thinks he has digeorge syndrome and other syndromes on top of this! He does not have any heart complications- thank God! I just wanted to send out my love and support to ALL of you! And especially to the parents who lost their angels! My heart breaks for you! Also it breaks for the lady who HAD to make the worst decision she will ever have to make! You did what you felt you had to do! You did NOT know what life was going to be like for your angel! And hind sight is ALWAYS 20/20! So I am sending you out a particular stronger hug, and may the knowledge of people NOT blaming you for making the decision help your heart and soul heal! God Bless ALL of you!

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  13. My son Jayden Chase Taylor was borning Jan 21, 2010 with HLHS and has had two to the series of three open heart surgerys. He had his first one at a week old and the second one at 2 1/2 month and he is such a miracle. Jayden will have his three sugery sometime next summer.

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  14. Our baby girl has been diagnosed with interrupted aortic arch, VSD, aortic stenosis, a pelvic kidney, and IUGR. DiGeorge syndrome is also suspected. It is so great to see all these pictures of sweet heart babies. I am excited and nervous to meet ours!

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  15. I was 3 months premature and had Patent Ductus Arteriosis (PDA) they were able to correct it with heart surgery and I am happy and healthy today thanks to many prayers on my behalf. I now am 29 (30 in december) and have 3 wonderful children!

    My prayers go out to all these sweet children and their families!

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  16. My daughter has HRHS, tricuspid atresia, large VSD(thats now closed and she has a shunt) and ASD. seeing these photos gives me so much hope for her. Iam a very young mommy, and when she was diagnosed at 20 weeks GA, i was terrified! here is my blog!

    http://brooklynnsmama922.blogspot.com/

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  17. My 14 year old son was diagnosed with Shone Syndrome in 1998, he has had 3 heart surgeries and will need more. Thank you everybody for sharing with everybody, makes me feel that I'm not alone,and that there is hope for my son.

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  18. Thank you for your site and your tribute to CHD babies. I'm new to this "heart family" world, but am in need of support like this as our baby was born with a serious heart defect this year.

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  19. It is amazing to see all these strong little kids. My baby is Gunner and he passed away December 28th of 2010. I miss him everyday and wish i could hold him.

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  20. This just breaks my heart but knowing that My daughter isn't the only one makes me feel alot at ease. She had fetal growth restriction at about 20 weeks gestation. Had the toug pregnancy with placental abruption and placental previa. was monitored everyday for over 30 weeks. had a total gestation of 48 weeks. was born as I thought healthy. Had heart failure at 2 weeks due to congentional heart Disease. had a Patent ductus arteriosus then had to have corrective surgery.and Survived life without a father. She just turned 2 and I LOVE HER to pieces. Sunday-Ray born August 30, 2009

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  21. To anonymous who chose to terminate your CHD baby with regret. My heart goes out to you. I know the doctors give you this option. Nothing can bring your baby back, but you must pray daily for strength to endure. Our God is a great God who forgives. You will be with your baby some day. Until then, fill your life with good things. Your baby will be in heaven waiting for you. God Bless you and make you strong.

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  22. I am so proud of these strong kiddos! It makes me smile every time i look at these pictures and see them smiling and happy and living life. They are amazing!I also have a daughter with a heart defect. and its just nice to know that these kids can live a normal healthy life. something that doctors always told me while i was pregnant my daughter would never be normal......what is normal anyways these days right!?
    here is my blog http://jovannaandismaelzamora.blogspot.com/

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  23. i'm a pc nurse. great to see all these faces!

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  24. Im not alone... :) feel so happy to see the beautiful babies... i have a son who is almost 7 mths now with TGA, DORV, PDA, VSD & ASD... gone through 3 surgeries n doing great now after staying in hospital for 5mths + since birth...

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  25. My wonderful amazing inspiration and my reason for living has tetraologie van fallot and chromosome deletion 15q11.2. We have been through hell and back as parents... but my little hero shows no sign of the last six months. We learn in November if he will require his second operation which will lead to a third (valve transplant). I wish my son did not have so many challenges but I know that it has made me a great mum who never takes a single of his breaths for granted. I kiss him a thousand times (I cant look at him without kissing him!!!)a days and thank him for letting me be his mother!!! It was reading blogs such as this that gave me hope that our little one would make it through. Here is to the most amazing children in the world!!!! You are a blessing, a gift... you make us better people!!! My advice... TRUST YOURSELF and BELIEVE AND TRUST in your child.

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  26. This was such a great blog to come across. I was searching around because I am getting anxious about our daughters up and coming surgery. This will be her third one and hopefully the last one. She is Hyplastic Right Heart, and other issues but that is the main. She is a one ventrical baby..and a blessing to us. She is the first out of our 5 other children to have CHD. She is a great baby. Born 6/2/11! We are so happy she pulled through her open heart surgery at 6 days old, and her second at 6 months, and now in March will be her third one.
    These babies are all blessings..and God sent a gift and though it is hard to see our babies go through this, it makes us stronger, better parents, and a new perspective on life. God only gives us what we can handle... I wouldn't wish this upon anyone, but my baby is such a god send to us and means so much to us. She completes our family with her loudness, her funny little personality, and her busy little body.. lol now that she can run she runs everywhere.. :)
    I will keep all these babies in my thoughts.

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I heart CHD Babies!