When A Child Has Congenital Heart Disease | TODAY

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  • Опубликовано: 25 янв 2018
  • Each year, 40,000 children are born with some form of congenital heart disease. In a world of tubes and oxygen, surgeries and beeping monitors, parents and medical teams battle to keep their tiny hearts beating against the odds - but it’s the children themselves who are the true heroes.
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    When A Child Has Congenital Heart Disease | TODAY

Комментарии • 267

  • @gkrt2474
    @gkrt2474 4 года назад +164

    I'm here after watching Phil and Alex having their baby diagnosed with this, God is with us all, I LOVE YOU ALL MY BROTHERS AND SISTERS IN THIS WORLD

  • @_Bubblefly
    @_Bubblefly 5 лет назад +114

    I cried watching this, i have a congenital heart disease i couldn't imagine how many gallons of tears shed and anxiety had my parents went through. I love you mommy and daddy. 💕

    • @catieq5270
      @catieq5270 4 года назад +2

      Nana Finn me too

    • @jessicajoy5954
      @jessicajoy5954 4 года назад +2

      I have CHD too! Keep up with my journey on Instagram and Facebook at The CHD Life. Insta: The_CHD_Life_

    • @EstrellaNavarrete
      @EstrellaNavarrete 4 года назад +3

      Same here!! I had the Fontan OHS May 1985. ❤️

    • @priyamaurya964
      @priyamaurya964 4 года назад +4

      @@EstrellaNavarrete hello ..I am priya ,my baby is also suffering from congenital heart disease .his BD Glenn process done in 2016. Now he is 5 year old .doctor saysthey will go for fonton process.i m worried about how is quality of life after fonton process ? .plz help me

    • @EstrellaNavarrete
      @EstrellaNavarrete 4 года назад +7

      priya maurya hi Priya! I can’t speak for others, but my quality of life has been great! I’m almost 37, I have a great career in higher education, I’m married, I sing in my church music band, I love swimming in the pool with my family, we enjoy traveling, I did play some sports as a younger teenager in school. My oxygen level is always above 95, and I feel great. Life hasn’t been perfect, but it has been pretty close to it! I can’t complain. I’m blessed. 🙌🏻 I wish you the best and will be praying for your son. 🙏🏻

  • @dramamama2856
    @dramamama2856 4 года назад +38

    I don’t know really anything about congenital heart disease.. but recently these amazing youtubers I watch (Phil & Alex) went for a screening & found out their baby girl will have congenital heart disease. I know there’s nothing I can say or do to fix this or make them feel all better but maybe I can educate myself & tell others what I’ve learnt so there’s a bigger awareness. I have to ask that whatever religion you believe in, please pray to your god about this family. They have a journey ahead of them and could use every single prayer.

    • @sounita7692
      @sounita7692 4 года назад

      I also didn't know it and today after watch Phil & Alex finding their daughter have it, you tube recommend this video. I watch their videos for over a year now. When I found I am pregnant, I was praying for them and short after me when they announced they are expecting, I was happy as I was for myself. I hope their baby girl will be fine and they can pass this hard time. Love from Afghanistan

  • @BethFlower7889
    @BethFlower7889 6 лет назад +53

    I was born with a severe CoA that required life saving surgery as an infant. I’m 28 and doing well.

    • @ashleyrussell9451
      @ashleyrussell9451 6 лет назад +5

      Congratulations.... #heartwarriors. #chdawareness

    • @mehakomer6453
      @mehakomer6453 5 лет назад

      You surgery is done?

    • @MzCincoDeMayo
      @MzCincoDeMayo 4 года назад +1

      Thank you for this! I am pregnant and they think my baby may have a CHD and I am terrified.

    • @Treehouse409
      @Treehouse409 4 года назад +4

      I’m 28 and my baby had CoA and open heart surgery. Your comment made me feel better for his future

  • @mariemottaz2984
    @mariemottaz2984 6 лет назад +34

    I am a parent of a CHD child. He will be celebrating his 29th Birthday next month!! This video is so spot on with what we all have endured. Our son has had 7 open heart surgeries and with each one we worry have we "used up" our blessings. But he has thrived into a beautiful man who will be getting married this year!

    • @hannahroberts9667
      @hannahroberts9667 6 лет назад +1

      This gives me so much hope, thank you.

    • @timc2219
      @timc2219 6 лет назад +2

      our son is 19 now, played sax in highschool band, rebuilt his own truck, Autocrosses my mustang, has a wonderful girlfriend, recently started DJing part time on a local country station(maybe from the months on the vent, but when his voice changed, it REALLY changed- sounds 10 times bigger than him), he did try to get into the AirForce, but was declined due to the heart/lung history- but hes been working steadily since he was 16, saves his money, wants to buy a new dodge charger...so easy to forget those scary days long ago as he went thru his three open hearts, two caths before 3 months old and under 6 pounds... God Bless our Little Miracles!

    • @sylvanafow1340
      @sylvanafow1340 7 месяцев назад

      That is so wonderful to hear. My son has had 2 open heart surgeries by the time he turned 7 months old. Being a mom to a baby with CHD is something else.

  • @kathyabel5338
    @kathyabel5338 4 года назад +9

    I was born with a bi-cuspid aortic valve. At 59 years old I had successful repair surgery. I pray every day for heart patients and their families as well as the medical community. Thank you God for blessing me with more time on your beautiful earth.

  • @seantetpon
    @seantetpon 6 лет назад +12

    CHD Dad here. Our son is now 15 and we are Blessed by God to have him with us!

  • @jazzyfresh96diane
    @jazzyfresh96diane 4 года назад +8

    my daughter was born in 2018 with congenital heart disease she had heart surgery her second day of life she stayed in the hospital for almost 2 months and also had a feeding tube inserted she is now 1yr old and doing fine and eating everything by mouth it’s stressful even if she is okay and doing great i still have my worries thank god and her team of doctors and nurses who took care and helped my baby and may god bless those family’s who have gone through this or are barely going through this at the moment. i send you prayers hugs and nothing but love ❤️

  • @futuredeadcamper1736
    @futuredeadcamper1736 6 лет назад +45

    My son has went through two open heart surgeries, and numerous heart caths and I am so thankful he will be two years old next month. Nothing ever prepared me for what being a heart parent meant. About how it’s the scariest but most rewarding job in the world. This video touched my heart. And I thank the team who filmed it and put it out there for the world to see a brief few moment in the life of a heart parent.

    • @unbeliveableknowledge3880
      @unbeliveableknowledge3880 3 года назад

      ruclips.net/video/0WjymVxPF0g/видео.html

    • @shoribareu8549
      @shoribareu8549 2 года назад

      Contact number dena sir

    • @nafinafila9486
      @nafinafila9486 2 года назад

      Do you have another child without heart desease. Is there chance to healthy baby after one baby with heart defect

    • @wazhmarahmanzai4090
      @wazhmarahmanzai4090 9 месяцев назад

      My son is just weeks and he had now same problem please 🙏 dua

  • @realtimeparenting3288
    @realtimeparenting3288 6 лет назад +15

    As a heart mama to a 10 year old with Tetralogy, I can say this is spot on. Thank you, Today show for a very real, honest story. And to all the parents and the kids, my heart goes out to you too. This is indeed our story of strength and love.

  • @ashleyrussell9451
    @ashleyrussell9451 6 лет назад +24

    Thank you so much for this video. I am a mother to a chd child and the ups and downs you face everyday is hard my chd child is 18 months old and doing really good she has her 4th surgery in the summer pray for my chd family. And to all Chd families you are all in my prayers. I am so blessed to be a mother to a beautiful chd warrior

    • @EstrellaNavarrete
      @EstrellaNavarrete 4 года назад

      Ashley Russell hope is your child doing! I had the Fontan 5/1985 ❤️

  • @amandatabbert
    @amandatabbert 6 лет назад +3

    Thank you Zach and Lexi for sharing your story...our story...with the world. It was our pleasure to have our son be part of this touching and brilliant video about CHD.

  • @hannahroberts9667
    @hannahroberts9667 6 лет назад +19

    I weep every time I watch this, my beautiful 5 month old daughter has had 2 open heart surgeries with more ahead, and this video touches on so many raw and real emotions. Thank you.

    • @EstrellaNavarrete
      @EstrellaNavarrete 4 года назад

      Hannah Roberts how’s your daughter doing? ❤️

    • @shellyg5705
      @shellyg5705 4 года назад

      Hannah Roberts How is she doing ?

  • @nesstrujillo
    @nesstrujillo 6 лет назад +9

    CHD mama here, so grateful that y'all are helping spread awareness. 💓💓💓💓

  • @Luccierick
    @Luccierick 5 лет назад +10

    Some of you parents and patients over here are so lucky, I am a mother and have just lost my son few weeks ago to CHD , he was about 6 months. I am missing him so much...oh God I cry everyday ...

    • @analiseamburgey4429
      @analiseamburgey4429 5 лет назад +1

      You were very lucky and blessed as well. So sorry for ur loss. He was in ur life for a reason. You can do this rise up and raise awareness in his honor. From one chd mom to another

    • @puzzled8509
      @puzzled8509 4 года назад

      LucciKay I’m sorry for you loss he is in a better place now.:’(

    • @abdulwahab2635
      @abdulwahab2635 3 года назад

      Which type of Heart defect ur son has??vsd or asd??

    • @ayeshaahmad1588
      @ayeshaahmad1588 3 года назад

      😭😭😭😭😭

    • @ayeshaahmad1588
      @ayeshaahmad1588 3 года назад

      But it is so painful to see your baby in pain n oroblem every time

  • @PinkHawk191
    @PinkHawk191 6 лет назад +21

    Thank you Today Show! I am a 27 year old with CHD. I have a CHD known as Tetralogy Of Fallot Absent Pulmonary Valve. I have had two open heart surgeries. Thanks to my congenital heart team at the Helen B. Taussig Congenital Heart Center at the Johns Hopkins Children's Center I am alive. I am 1 in 100! I am a CHD warrior! Thank you for bringing awareness to CHD. I have had a lot of issues over the last couple of years and I have now been on heart function medication for a little over 2 years. Since I have had my heart function medication my heart function has been better. I am so lucky to have a great team who has fought to keep me alive. I am grateful to be alive. CHD is a tough battle, but I keep fighting every day. Thank you so much for the awareness!

    • @yashashreesawant3590
      @yashashreesawant3590 3 года назад

      How are you now

    • @PinkHawk191
      @PinkHawk191 3 года назад

      @@yashashreesawant3590 I am pretty stable. I have my yearly congenital heart clinic visit with my congenital heart team. I am dealing with a few issues. My pediatric cardiologist said we will talk today and see what my echo has to show. I have good days and bad days. I just take it one day at a time. I have improved on medication. My heart function was more stable on the last echo. Hoping to hear that my heart function continues to be stable with my medication. My congenital heart team at the John Hopkins Children’s Center have been amazing and have gone above and beyond the call of duty during the pandemic.

    • @yashashreesawant3590
      @yashashreesawant3590 3 года назад

      @@PinkHawk191 good may god bless you live long

    • @yashashreesawant3590
      @yashashreesawant3590 3 года назад

      @@PinkHawk191 hey i hv query my baby has angiography and stenting done bt she do not gaining weight shes total correction is pending what do you think she will gain weight after total correction

    • @PinkHawk191
      @PinkHawk191 3 года назад

      @@yashashreesawant3590 I don’t know. I only know my specific condition and how I am doing. I would ask her cardiologist.

  • @idyllicparadise9678
    @idyllicparadise9678 4 года назад +5

    My baby boy born 5/19/2020 my first born I love him so much he has HLHS and is recovering from his first open heart surgery

    • @medelizalopez3235
      @medelizalopez3235 3 года назад

      How's your baby now?

    • @JenniferMartinez-zm1fj
      @JenniferMartinez-zm1fj 3 года назад

      My son too was born with Hlhs...very rough and hard..but nothing makes u stronger than the love of your baby...make sure u get all the help u need..I had to fight to get nursing help at home..and secure therapy...star kids program is saving his life..and also gave peace to myself..

  • @catieq5270
    @catieq5270 4 года назад +8

    I have CHD and have a pacemaker. I’ve had 14 surgeries total and defied the odds. I’m now 29 and am so grateful for my cardiac team♥️

  • @PlayingTheLottoEveryDay
    @PlayingTheLottoEveryDay 4 года назад +6

    My son is here at Motts right now! And he has Hypoplastic Right heart and after he was born some how some way his pulmonary valve started working when it was not before. The did a procedure on him a few days ago that is trying to grow the right side of his heart! All the parts of the heart are there and working! And the doctors can’t explain how this happened. Because during the pregnancy and the day he was born he had pulmonary atresia. And a few days later the valve had grew to full size and started working. He’s a medical miracle and has great recovered from his surgery! The plan is to grow the right ventricle And he could end up with a two ventricle heart, Atleast a 1.5 ventricle heart! This changes his whole life and he could have a normal heart after all!! Thank you Motts surgery and nursing team! And thank you for the thoughts and prayers! Miracles do happen ,he is proof! We will be going home in a few short weeks!!🙏👼🏻❤️

  • @jessicajoy5954
    @jessicajoy5954 4 года назад +2

    Thank you so much for this! I had all my 3 Open heart surgeries at the UoM. I am very grateful for the medical team involved in saving my life.

  • @annewheadon7396
    @annewheadon7396 4 года назад +1

    Breaks my heart for their hearts those kids are such brave heroes , Great parents will heal them I know.. lots of love, and cuddles.. I wish you all well and bring your child home healthy,, God bless you all

  • @HRWWW
    @HRWWW 6 лет назад +4

    This is eye opening! I was born with full heart block in 1995, I grew up with non stop pacemaker changes because of difficulties and infections. I wish the Canadian news would start taking notice too help get the word out.

  • @Drklattrn
    @Drklattrn 6 лет назад +8

    My son was born with HLHS, Dr Ohye was his surgeon. He’s now 16, and thriving. I give praise to God and know the outcomes are not always what we want. Thank you for this video. It brought back a lot of memories walking through the halls of Motts Children’s

    • @unbeliveableknowledge3880
      @unbeliveableknowledge3880 3 года назад

      ruclips.net/video/0WjymVxPF0g/видео.html

    • @josephrusso5588
      @josephrusso5588 9 месяцев назад

      My son Gabriel has HLHS he is due on Christmas. I love to hear things like this to give us hope as we are scared .. how is your son doing?❤

  • @jazzyfresh96diane
    @jazzyfresh96diane 6 лет назад +7

    Im due this june 26 and my daughter has genital heart disease i pray every day our baby gets the help she needs when she arrives and is able to come home with her family and live a long life bless all these babies i wish them and their families nothing but happiness and hope they get to go home too.

    • @sarahjeanjamil
      @sarahjeanjamil Год назад +1

      Praying for you and your baby 🙏🙏🙏

    • @jazzyfresh96diane
      @jazzyfresh96diane Год назад

      @sarahjeanjamil thank you she's 3 weeks away from being 5now lol and is doing amazing!

  • @croatanfilms
    @croatanfilms Год назад

    Here doing research for a short documentary telling our heart failure story which happened with our 16 year old son in 2022. It's approaching 1 year now and I'm starting to dig through all of the video, pictures, and audio of that time. As well as watching videos like this to see some examples of what's already out there. I knew this would be hard but, I didn't realize it would be THIS hard! Going through all of this material is like being thrust back into that ICU room at Duke. Taking script notes through all of the tears is nearly impossible sometimes. Much love to all of those families who are dealing with heart disease, especially those families whose heart disease story involves their children.

  • @AideGDiaz
    @AideGDiaz 3 года назад +1

    Watching this right after getting the call with my babies surgery appointment. In 2 weeks. He's very strong

  • @bryanschwartz3034
    @bryanschwartz3034 3 года назад +1

    My daughter had heart surgery at 3 weeks old to repair multiple congenital defects. Thank you for posting things that let us not feel s alone.

  • @shirls023
    @shirls023 5 лет назад +5

    My daughter Ophelia passed away on July 9th just a few days shy of turning three months. She was born with undiagnosed TAPVR, and went into surgery the same day she was born.
    Even though my baby girl didn't make it I'm still greatful for the time I got to spend with her, and that wouldn't have been possible without the care of her Doctors, and nurses.

  • @dinahorsby6439
    @dinahorsby6439 4 года назад +3

    This is beautiful...and describe my life with a 4 month old with congenital heart disease

  • @mominhyderkhan
    @mominhyderkhan 4 года назад +2

    I have lost mine i can understand what she is saying and how it feels when ur child cant survive this
    My son was a hero

  • @megangundle9729
    @megangundle9729 5 лет назад +3

    Thank you for posting this. My heart warrior hero son was born with TGA. Nobody I knew had experienced a CHD and I felt extremely isolated during his birth. I love my son and am thankful for him everyday. Thank you for increasing awareness of these amazing humans and medical teams.

  • @beckylittle9495
    @beckylittle9495 6 лет назад +7

    I am 16 and i have pulmonary atresia a CHD. Ive had 3 major surgeries and 3 small ones. I am so thankful that my doctors did what they did and saved me, now i can do most things a normal child can do. Thank you for sharing this. Sending all my love ❤❤❤

  • @maddimallon967
    @maddimallon967 3 года назад +3

    This is me, i am result of Transposition of the Great Vessels. I had the Artirial switch. People are not aware of what we go through. I am 24 and wanting to start family.

  • @yarlett12
    @yarlett12 6 лет назад +5

    CHD mom to a wonderful 16 month year old baby boy. So glad to see a video showing our stories , and spreading chd awareness.

    • @D0-vid
      @D0-vid 4 года назад

      How
      Is he doing now?

  • @andi-roo9426
    @andi-roo9426 6 лет назад +6

    My best friend's daughter made it exactly 30 days. The cut is still fresh -- her funeral was only a couple weeks ago -- so this video was especially painful to watch. But also uplifting. Thank you for including both the success stories as well as the little angels who left us way too soon.

    • @ashleyrussell9451
      @ashleyrussell9451 6 лет назад +1

      Sooo sorry to hear this prayers this family is in my prayers #chdawareness

    • @timc2219
      @timc2219 6 лет назад +4

      the first day our son was at Rainbow's NICU, a little girl in the next isolette was failing...youre like 6 feet away, cant help but hear doctors explaining nothing more can be done, they took their little 6 hour old daughter and held her for the first and last time in a little room off to the side...oh how i hated being there, your heart goes out to those folks- nurses and doctors too- for what they are going thru, but soon, the mind races- was our son next? could we deal with it if he was? you just want to scream... think I stood there all night like a zombie, people came and went, but it was just surreal...in the end the thing that to this day has stuck in my mind was- that little girl never got to see a single sunset, yet how many times had I been upset over a bad day at work/car breakdown/the worst relationship failure/etc...all are moot in the grand scheme of things- how did I have any right to the 'poor me' stuff- that little kid never got even one sunset. tell you what, I havent NOT noticed a single sunset since, and someday when my time comes, hope to tell that little girl all about them...we all take so much for granted. My son made it thru his heart ordeal, three open hearts, two caths in under three months, weighing under 6 pounds- hes 19 now, works hard, is a fine young man...forgetting those scary days with the alarms, the 'bag' to get them breathing again, the hopeless fear as they go down to surgery, and so much more is oddly 'easy' sometimes- the rollercoaster ride is one most folks will thankfully never know, but to those that have, the good/bad days often come flooding back- and they need not ever be forgotten...we were there for a reason- trying to remind folks not to take things for granted is sooo hard to express, even if youve been there seeing the successes and failures, its still near impossible to put the thoughts to words... so sorry about your friends daughter - I know how you feel.

  • @dezmond1219
    @dezmond1219 3 года назад

    It’s hard watching this seeing there precious faces being born into this world without being able to enjoy because you are at the hospital

  • @proudmarinemom2
    @proudmarinemom2 6 лет назад +5

    Prayers for all

  • @mannysoriano
    @mannysoriano Год назад +1

    Wish you all the best... I had a chd since I was born but thank God I got through with it. I'm 52 now.

  • @jesusismygodsavioursoldier7719
    @jesusismygodsavioursoldier7719 3 года назад +2

    I was born with congenital heart disease. I was born during the 80's and doctors told my mum I had a high chance of dying. I had two major open heart surgery's. She turn to my loving God and saviour Jesus Christ and he answered. Ive been through heart failure during my 20's God has been so good he has never left me. I thank God blessing us with these doctors who are such a blessing. But I give all the glory to my loving God and saviour Jesus Christ. When he says yes. No one can say no.
    I pray for every person who is going through this in Jesus Christ mighty name Amen. ✝️

  • @josephrusso5588
    @josephrusso5588 9 месяцев назад

    This video was amazing. My son Gabriel has HLHS he is due on Christmas. I am trying to prepare myself for what is to come.we are scared and this gave me some more hope. Thank you ❤f❤

  • @EstrellaNavarrete
    @EstrellaNavarrete 4 года назад +2

    Thank you for this video!! ❤️ I’m a CHD Heart Warrior!! I was born with “complex congenital heart defects” - VSD, ASD, D-TGA, HRHS. I had the Fontan OHS May 1985 at UCLA in California. Praying for all the babies living & thriving with CHD. 💗

    • @simpus4772
      @simpus4772 3 года назад

      My son also same problem. Now he is 3 month old. How is your health condition Sir . At the same time please tell your,s mom and age different.

    • @kirstenb3354
      @kirstenb3354 7 месяцев назад

      My daughter just had her AV Canal “repair” by Dr. Van Arsdell here at UCLA and I couldn’t imagine a better team by our side for her care. I will always be an advocate for Mattel Children’s Hospital even though they’re considered a smaller children’s hospital here in SoCal.

  • @breadgirl8093
    @breadgirl8093 5 лет назад +6

    I have tricuspid atresia, pulmonary stenosis, and 6 other heart defects. I was also born with a benign cyst in my brain and two right thumbs. My first four years of my life was spent in and out of the hospital. I was even isolated from other children because my immune system was so weak and now my social-emotional development isn't as matured as others. I have a learning disability and mental health problems. I'm Guatemalan and bisexual as well and when I was born my parents weren't married so it was difficult to take care of me and my parents could've abandoned me but they didn't.

  • @angeldaniel7360
    @angeldaniel7360 4 года назад +5

    I didn’t know anything about heart ❤️ disease ! I see Alex and Phil RUclipsr video they now alone and medicine work miracle!!!

  • @spaceman-o1c
    @spaceman-o1c 6 лет назад +4

    We should make a fight for General heart disease raise money I pray for all thanks to America for having the world's best heart and doctors

  • @LadyCatherine538
    @LadyCatherine538 6 лет назад +10

    I am the wife of a Pediatric Cardiologist who is newly retired. I view all these babies, children, adults as "family" I never met but integral to our life as an actual family.
    The next challenge is discovery of the molecular basis of heart development, where science and clinical medicine converge.

    • @monkie-cmonkie-do3561
      @monkie-cmonkie-do3561 6 лет назад +2

      Catherine Marchand thank you to both you and your husband! I have transposition of the great vessels and I was the youngest to have the Schumacher repair in 1980 in Minnesota. Obviously I am thanking your husband for all of the lives he has saved and helped. I thank you as well for always being there for your husband to get him through those bad days when he may have lost a patient or something didn’t go as planned. It takes a lot to be there for a spouse who is on call 24/7 weekdays, weekends and holidays. You are right, patients see their cardiologists like family, my cardiologist and heart surgeon were invited to my wedding. Unfortunately my cardiologist was working but my surgeon was able to come and he got a standing ovation because without him I would not be here! My first year I spent Easter, Memorial Day, Fourth of July and New Year’s Eve and New Years day in the hospital. Again thank you so both so much for your love, hard work and family-like support to your husbands patients! ❤️

  • @frankiee1284
    @frankiee1284 4 года назад +3

    I am 13 and I have CHD, it’s known as Idiopathic Hypertrophic Sub aortic Stenosis. I have had open heart surgeries and didn’t have much of a chance to survive and it keeps getting lower each surgery, next surgery is a transplant... my parents work so hard for me and its so hard for them, families, and me. I am also having a problem rn with my breathing so this is not going well, transplant is next week. Super nervous and the person that is giving their heart to me is super nice! I will miss them so bad and I am so happy for them!!!!! Thanks Drs, Nurses, and everyone! if your kid does have CHD when they are born, know that the doctors and nurses got your back and are here for you, you can also ask them any questions!

  • @marissasabin4638
    @marissasabin4638 4 года назад +1

    THANK YOU!!!!!!

  • @future_Victoryofficial
    @future_Victoryofficial Год назад +1

    🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾 GOD can heal my daughter too 🙏🏾🙏🏾🙏🏾🙏🏾

  • @deniseramirez7175
    @deniseramirez7175 3 года назад +1

    I am one of them and I am now 14 years old doctors didn't expect me to survive and look at me still here fighting for my life facing hard challenges everyday I'm lucky to still be here and I'll never give up on fighting and one day I'll be able to be running and playing like everyone else

  • @adultskatewithjlo
    @adultskatewithjlo 3 года назад

    I was born with a bicuspid aortic valve and aortic stenosis. I'm now 20 years old, luckily haven't needed surgery yet :)

  • @rosea2350
    @rosea2350 2 года назад +1

    I have Tetralogy of Fallot. I’ve had two open heart surgeries. I’m 29 now and pregnant with a baby girl due in two months.

    • @sarahjeanjamil
      @sarahjeanjamil Год назад

      Congratulations po.. you are a warrior and a survivor...

  • @ThushiiG
    @ThushiiG 5 месяцев назад

    My baby had ALCAPA. It was not diagnosed at birth. We lost her after the open heart surgery at 4 months . She was my biggest blessing and my hero she will always be. 💔

  • @Naughtydahmer
    @Naughtydahmer 6 лет назад +2

    Cried my head off so much

  • @maxncheese5216
    @maxncheese5216 6 лет назад +2

    I'm not crying. You are

  • @scottymacalister5436
    @scottymacalister5436 2 года назад

    For me since I have CHD as well and the numerous surgeries I've had discharge day feels like a vacation back home cuz I knew I would be back in the hospital.

  • @Erinhaf203
    @Erinhaf203 6 лет назад +4

    I was born with congenital heart block 😊 I have a pacemaker now

    • @HRWWW
      @HRWWW 5 лет назад

      erin haf same here!

  • @GoodDr.
    @GoodDr. 3 месяца назад

    Nice video, and I’ve learned a lot, With dedication and perseverance, you can overcome the challenges of heart disease

  • @juliam.design2554
    @juliam.design2554 Год назад

    Jesus Christ how much did this touch me 😢

  • @nikkialgien
    @nikkialgien 6 месяцев назад

    I am 46 almost 47 I was born with Complex TOF with Pulmonary Atresia with severe Pulmonary valvular and artery stenosis. I have had 4 Heart surgeries, pacemaker. In Denver Colorado.

  • @breawnamunoz1123
    @breawnamunoz1123 3 года назад +2

    I recently found out that I have a CHD. They didn’t catch it when I was younger apparently and now I’m possibly looking at open heart surgery.

    • @sarahjeanjamil
      @sarahjeanjamil Год назад

      How old are you now? Same with my son, we only found out his Congenital heart disease just yesterday

  • @charmaineallan9636
    @charmaineallan9636 9 месяцев назад +1

    ❤ my daughter had 4 open Hart surgery s she was born with the deseas at the age of 4months Se was at mitted to Redcrosshospital Hospital her heart only had two Chambers and there they fixed her heart she will be 29 years old in November 19

  • @monapawar8242
    @monapawar8242 3 года назад

    My baby had also diagnosed with heart disease and she is no more with us ..she is our greatest hero

    • @nikkialgien
      @nikkialgien 6 месяцев назад

      I am sorry for your loss 😢😢😢

  • @Mommyummi
    @Mommyummi 2 года назад

    My son born with congenital heart desease, I cry every day I feel sorry for him, we don't have any money for his treatment,

  • @sashal8519
    @sashal8519 6 лет назад +3

    My son has dilv pulmonary artresia and I'm a single mother in need of help!!!

  • @masibam1639
    @masibam1639 3 года назад

    My baby girl has asd, vsd, pda, and single aorta. She was born in 34 week pregancy, and we are still fight till today.

  • @pierced.g0ddess991
    @pierced.g0ddess991 4 года назад +2

    My son is 3 weeks old and has been in the hospital the whole time just had surgery he was born with a heart defect and I'm currently in the process of being able to take him home he will need more than likely need more surgeries in the future I have another child who is fine no problems whatsoever so I'm just ready but scared moving forward in a journey I'm not used to but either way mama loves you my warrior

    • @monkie-cmonkie-do3561
      @monkie-cmonkie-do3561 3 месяца назад

      How is your son doing now? I’m a 44 year old with a CHD called transposition of the great arteries I hope & pray things are going well ❤🙏🤗

  • @lunchboxaro
    @lunchboxaro 3 года назад +1

    Just had my first child, this is the hardest thing I have ever experienced. He has tetralogy(non duct dependence) a single kidney with stage five reflux. Haven’t cried in 20+ years and this made me brake, kinda looks silly a big burly man crying o well.

  • @TributeMack2015AngrierMack
    @TributeMack2015AngrierMack 2 года назад

    I cried while watching this this is so sad 😞 🥺🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼I also was born with a heart condition as well 😞😞😞😞

  • @casimiracastro2737
    @casimiracastro2737 22 дня назад

    God bless these little ones, their brave parents, the Healthcare staff and modern medicine. Now the adulthood of these children can be VERY bright and fulfilling thanks to modern treatments. Such a time to be living, where a baby born with a cardiac disease that meant a sure death not that many decades ago, now have a great chance to fully grow up and live long, long lives!

  • @khelzing
    @khelzing Год назад

    Our baby died because of congenital heart disease, he only feel the world for 20 hours, soooo heartbreaking.

  • @SaNam5407
    @SaNam5407 2 года назад +2

    I hve this problems in my daughter

  • @historymyths4662
    @historymyths4662 6 лет назад +7

    Hi am 16 and I have CHD I have had two surgeries when I was a baby and having CHD sucks it's a lot of chest pain if you have any questions feel free to ask me.

    • @mehakomer6453
      @mehakomer6453 5 лет назад

      I hv soo many questions

    • @D0-vid
      @D0-vid 4 года назад

      star wars reviews what type of CHD you have. Please share. My pregnant wife was told
      we will have a baby with heart defects.

    • @phillipmitchell6184
      @phillipmitchell6184 4 года назад

      What chd do you have ?

    • @nehalhamza7799
      @nehalhamza7799 2 года назад

      my baby had this problem

    • @historymyths4662
      @historymyths4662 2 года назад

      @@nehalhamza7799 I feel so sad for you.

  • @menopausebarbees4u
    @menopausebarbees4u 4 года назад +2

    I have written a multi-award-winning story about our experience entitled, Incompatible with Nature-A Mother’s Story. (Amazon) Boston Children’s cardiologist Dr. Michael D. Freed wrote the forward. In part:
    “Much less commonly, perhaps one in one hundred thousand, there seems to be a problem with the bilaterally and there is only one atrium, one ventricle or one vessel leaving the heart. When there are variations of venous return to the atrium there may be variations in the position of the abdominal organs and veins, usually called heterotaxy syndrome.
    In Marc’s case he had one of these heterotaxy syndromes with all the systemic veins coming back to the heart entering into a “common” atrium, a single large ventricle, and only one great vessel leaving the heart, in Marc’s case the aorta. The pulmonary artery, the vessel going to the lungs was not connected to the heart…”
    Basically, my son, Marc, was born with only half of his heart. My story chronicles my journey of doing all I could to ensure my son had a chance at life while battling my own fears, an array of naysaying doctors, his innumerable infections, and struggling with a foreign language in Germany-where the doctors told me to let him die.
    I fought for Marc’s life and thankfully, despite the prognosis and the difficulties, Marc is today thirty-five years old and thriving. I have written this story to inspire doctors and caregivers to be more empathetic for their charges and to encourage patients to be courageous and assertive in their health care. Thank you for sharing this beautiful video.

  • @priyasingh8772
    @priyasingh8772 8 месяцев назад

    Lost my baby 47 days after he was born, still miss him, no one could ever replace his place, nor can anybody feel the pain, which i and my husband goes through each day, being felt so incomplete without my boy, i love him, i miss him a lot,

    • @nikkialgien
      @nikkialgien 6 месяцев назад

      So sorry for your loss 😢😢

    • @priyasingh8772
      @priyasingh8772 6 месяцев назад

      😢​@@nikkialgien

  • @brendanfairfield6448
    @brendanfairfield6448 8 месяцев назад

    I am a survivor of a rare heart defects called sub artotic stenosis and I am also a proud Autist. I have had a couple of surgeries and a third one is due in the near feature.

  • @Monstah-xd9hc
    @Monstah-xd9hc Год назад

    I never leave comments, merely only read them, but I just learned today 2/3/23 that my unborn (first child) has CHD. Needless to say that’s a gut punch I don’t wish on ANY expecting parents. I believe in God and his miracle working power but even if my bundle of joy is born and we have to go through this cycle, I’m doing it with God’s covering knowing my lady, my baby, and I can endure. Thanks for reading this comment and if you have any spare prayers, we’d love for you to send one out for our baby girl.

    • @sarahjeanjamil
      @sarahjeanjamil Год назад

      Sending hugs and kisses as well as prayers po

  • @ritasarpomaah9665
    @ritasarpomaah9665 Год назад

    Please can we treat it

  • @ioletmcfarland3017
    @ioletmcfarland3017 4 года назад +2

    I have a v.s.d. myself one day I have to have surgery on my aorta and I have cerebral palsey i also have heart disease from my mommy i. Mommy I. Has the same problem with her heart

  • @virtualwalkjpn1298
    @virtualwalkjpn1298 3 года назад +1

    My son was diagnosed yesterday with CHD. He is not even a week old. It pains me so much, because he has multiple problems with his heart. He has been diagnosed with 4. He will be operated for his CDA and PDA next Thursday but still needs 2 more surgeries.
    I need all the prayers I can get. And support. I feel lost and haven’t slept.

    • @zoi7871
      @zoi7871 3 года назад +1

      My prayers with you.how is your baby doing now?

    • @ilmataylor9941
      @ilmataylor9941 2 года назад

      Hope you and your baby are doing well now

    • @sarahjeanjamil
      @sarahjeanjamil Год назад

      Same in our case. , My baby was having his 2D echo just yesterday and find out that he has Tetralogy of Fallot with severe Infundibulovalvar pulmonic stenosis.

    • @sarahjeanjamil
      @sarahjeanjamil Год назад

      We are advised to have his surgery as soon as possible..

    • @Little_Lotus10
      @Little_Lotus10 Год назад

      Hi everyone! Thank you so much. My son is now 2 years old and had 2 heart surgeries to correct 4 conditions so far. PDA, CDA, VSD and aortic stenosis. Although the aortic area is still experiencing higher blood flow pressure due to having 2 valves that are slightly curved and a muscle mass near it, he is well and is a very active toddler. :) there may be a need for another surgery in the future if the pressure to the aorta is too much, but that’s not until maybe when he’s a teen or an adult.
      My channel name changed but I’m the original poster. :) thank you for your prayers

  • @Lamjan.6450
    @Lamjan.6450 Год назад

    My daughter was diagnosed having congenital heart disease, patent ductus arteriosus @1week old seen in 2decho and having maintenance until 6mos her pedia cardio advised us she needs to undergo pda ligation because there is severe mitral valve regurgitation and heart enlargement , and thanks God her operation is successful and now my baby is doing fine.

  • @Sami-ts5fl
    @Sami-ts5fl 4 года назад

    I cryed so much from this

    • @FrankSmith-zz5qn
      @FrankSmith-zz5qn 3 года назад

      My health was horrible before I decided to try the Protocol Of
      taking Dr salato herbal mixture. I felt there was no hope for
      my health and I was to try the Protocol thinking it wouldn’t
      work because I have visited so many hospital but same result.
      However, I was convinced by my friend to try the herbal
      medicine because I wanted to get rid of Heart attach. The herbal
      mixture that was given to me was really quick and easy to
      take, and since I have been taking it for less than 5 days I have
      less outbreak. But within 2 week i was fully cured from Heart attack
      The herbal medicine really work and I will like to share this
      great herb doctor contact with you all email him
      drsalato9@gmail.com or WhatsApp
      +2348073823302

  • @anuraggrover9990
    @anuraggrover9990 2 года назад +2

    You're just giving your baby pain for life
    It can't be cured
    Life won't be good for anyone of you
    Let your baby go...

  • @kaitlinharrison9740
    @kaitlinharrison9740 6 лет назад +2

    Amazingly accurate and incredibly sad! My daughter is 6 months (today!) has a complex heart defect, truncus arteriosus and is treated at CHOP. It certainly has changed our lives but our daughter is a beautiful gift and we thank god for everyday we have with her. ♥️ #BrieStrong facebook.com/briestrongTA

    • @sarahjeanjamil
      @sarahjeanjamil Год назад

      Sending love , hugs and kisses po.. Praying for her recovery

  • @chelseygowan4719
    @chelseygowan4719 3 года назад +1

    My son has CCHD

  • @heyitsania1683
    @heyitsania1683 3 года назад +1

    My older brother Died because of this He was brounth to Heart center to let him live but It didn't last long Every child deserve to live Especially on Child with chd

    • @nikkialgien
      @nikkialgien 6 месяцев назад

      Sorry for your loss of your brother I couldn't imagine losing my brother 😢😢😢

    • @heyitsania1683
      @heyitsania1683 6 месяцев назад

      @@nikkialgien he died years after my birth but i can imagine loosing another brother it would be painful especially o n how close you are

  • @yellowskycreations4542
    @yellowskycreations4542 5 лет назад +1

    I have this

  • @Simmonmurphy
    @Simmonmurphy 2 года назад +1

    We just lose a newborn baby today around 12 AM in Windhoek Namibia Africa had the same problem 😭😭😭 lack of money make us watch her die

  • @arnelmacuto6657
    @arnelmacuto6657 3 года назад +1

    My baby heart had chd vsd

  • @dianneflores2015
    @dianneflores2015 4 года назад +2

    😭me too i had a congenital heart diseased until now , im 23years old the doctor said i need a half million , but i don't have that lot of money ... i dont know what to do... 😭😭

  • @LITTLE_EMO.7
    @LITTLE_EMO.7 2 года назад

    Cute baby

  • @angelofdarkness1980
    @angelofdarkness1980 4 года назад +1

    I was born with hypoplastic right heart syndrome

  • @KrishnaKrishna-fd5lt
    @KrishnaKrishna-fd5lt 7 месяцев назад

    Ok

  • @yellowskycreations4542
    @yellowskycreations4542 6 лет назад +2

    When you have congenital heart defects

  • @rachelwhited4187
    @rachelwhited4187 6 лет назад +2

    I was born with heart Problem

  • @noziponi8413
    @noziponi8413 5 месяцев назад

    My grand son also has a heart problem He is only 4 months

  • @muhammadaizaz5214
    @muhammadaizaz5214 Год назад

    Tricuspid atresia ka ilaj possible hai

  • @craigculp4731
    @craigculp4731 6 лет назад +1

    Bawling....

  • @Rajkumar-xf7fw
    @Rajkumar-xf7fw 3 года назад

    My baby his only 6days old have CENGENITAL HEART DISEASE SMALL OSTYPE ASN (2.4 mmkvith Lt.> Rt. SIHUNT AURTICARCH any problem please reply

  • @bellamillicent7358
    @bellamillicent7358 4 года назад

    Hi all,pls my son has heart issues dat requires a heart surgery.Pls kindly help me wit d name of dis hospital n d country, am a Nigerian n have Neva travelled out of my country b4 pls u guys shud help my son.

  • @Shaheen_bibi.
    @Shaheen_bibi. 2 года назад

    My niece’s heart has birth defect her left side hypo plastic left heart syndrome she is icu from last three days in Pakistan she is on oxygen her lungs are shrink because she is 32 weeks premature baby