Baby Born With Heart Outside Of Body (Ectopia Cordis) Makes History

Thursday, January 24, 2013:
Update to Baby Audrina’s condition

Yesterday, after a 3 ½ month stay, Audrina left the hospital with an external heart shield that she will wear moving forward to protect her heart as she grows. In a few years, Audrina will have surgery to place a more permanent protective shield inside her chest wall. She will be followed regularly by Dr. Carrie Altman and the cardiology team at Texas Children’s Hospital.

During her stay, baby Audrina was cared for by 80+ physicians, nurses, occupational and physical therapists and many more clinical staff.

To view updated photos of Audrina, visit this photo gallery.

Original Story:

Ectopia cordis fetal ultrasoundEctopia cordis is a rare condition where a baby’s heart is located either partially or totally outside the chest. Only 8 out of 1 million babies are born with ectopia cordis, and 90% of these babies are either stillborn or die within the first 3 days of life.

Today, I am happy to share that Audrina Cardenas, who was born with this very rare diagnosis has defied the odds and is doing very well. She is now 5 weeks old after receiving lifesaving heart surgery at Texas Children’s Heart Center when she was born.

I personally have only seen this condition a few times in my career and these are always very tricky cases. In fact, many of these babies do not survive.

Audrina’s condition was initially discovered during an ultrasound 16 weeks into her mother’s pregnancy. Her mom was given 3 options: to terminate the pregnancy, opt for comfort care, or elect to have her baby undergo an extremely risky surgery after birth.

Baby with ectopia cordis (born with heart outside chest)She chose surgery and was referred to Texas Children’s Fetal Center from her home in Midland, Texas. This risky operation on such an uncommon condition required specialists from a variety of care teams including cardiovascular surgery, plastic surgery, general surgery and others. But here at Texas Children’s Hospital we have the full spectrum of medical specialists to give patients like Audrina the best chance at making it. If Audrina and her mother hadn’t been referred to a facility like ours, she wouldn’t be here today.

Although her future prognosis is still uncertain, Audrina is currently thriving and making progress each day. She will continue to be carefully followed by a multidisciplinary team and will require specialized care by a pediatric cardiologist for the rest of her life.

But Audrina is a true fighter and we are hopeful that she will continue to progress. I am also hopeful that Audrina’s case marks the beginning or our ability to care for more children diagnosed with ectopia cordis in the future.Audrina Cardenes, ectopia cordis patient at Texas Children's Hospital

About Dr. Charles D. Fraser, Jr., Surgeon-in-Chief

I am the surgeon-in-chief, chief of Congenital Heart Surgery, and cardiac surgeon-in-charge at Texas Children’s Hospital.

I came to Texas Children’s Hospital in July of 1995 to establish a dedicated congenital heart surgery program. I've served as the chief of the Congenital Heart Surgery Service since that time.

Posted in Fetal Center, Heart, Leadership, Surgery, Videos

45 Responses to Baby Born With Heart Outside Of Body (Ectopia Cordis) Makes History

  1. Lori Bryant says:

    Amazing!

  2. Liiham White says:

    That’s is great news. Thank God for TCH :-)

  3. Christina martinez says:

    ONe more reason TO LOVE TEXAS CHILDREN’s Hospital

  4. Pingback: Texas Children’s Celebrates History Making Surgeory For Child Born With Heart Outside of Body | HOUMANITARIAN.net

  5. Sandra Salerno says:

    What a wonderful story. I am so thankful for medical professionals who are called to this challenging career. The family must feel forever grateful for these doctors!

  6. Carmen Neira says:

    We know for sure she’s on great hands with the best of the best. Me and my family love Texas Children’s Hospital.

  7. Stephanie Cantu says:

    WE ARE VERY GRATEFUL AND THANKFUL FOR ALL OF THE DOCTORS< NURSES< AND STAFF that have helped us!!! This is my baby cousin and we have ALOT to be thankful for, especially this year!! This is a WONDERFUL positive outlook for others to have and keep their faith in our Lord….BaBy AuDry is truely a miracle and a blessing!! Baby Audry and my Cousin Ashley are fighters til the end and we can't wait for them to come home!! Again our prayers and appreciation to all who was involved May God Bless You for you have blessed us….

    • Faye Dobson says:

      Hi Stephanie,
      My name’s Faye. I’m a features writer over here in the UK. I write for the papers and the women’s magazines.
      I was hoping you could pass my email address over to Ashley so she could get in touch and we can work together to produce a feature on this unusual condition? It’s faye@catersnews.com.
      Thanks,
      Faye x

      • Stephanie Cantu says:

        Hey Faye!! I would be more than happy to pass your info on to her! She is truely an amazing person and an inspiration! I don’t know how my cousin has done it through this situation but she has to be the strongest person I know!! She is also the mother of 6 year old twins that are waiting for Mommy and baby sister Audry to come home! I love her so much and hope her story will pass on faith, hope, and the will power to fight til the end because that is what Ashley has done! We have been blessed with a miracle!

      • Stephanie Cantu says:

        Hey Faye! I will be happy to! My cousin is a VERY strong woman and truely an inspiration! She is also the Mother of 6 year old twins:)))) So they can’t wait for Mommy and Baby Audry to come home! This is an amazing story and we are soo grateful for our Audry and thank the Doctor’s and medical staff for what they have done they are truely THE BEST!!!

    • Wilson Falcão says:

      Hello Stephanie,

      I would like to be able to monitor the recovery of this beautiful child who dominates my prayers daily, every day I pray for recovery, health and prosperity for Audrina as well as his family, I ask you kindly let me know how I can do to monitor the recovery of this miracle that ja I love so much without even knowing.
      PS: Excuse my English, I’m Brazilian

    • Wilson Falcão says:

      Hello Stephanie,

      I would like to be able to monitor the recovery of this beautiful child who dominates my prayers daily, every day I pray for recovery, health and prosperity for Audrina as well as his family, I ask you kindly let me know how I can do to monitor the recovery of this miracle that ja I love so much without even knowing.
      PS: Excuse my English, I’m Brazilian

  8. Lisa Fields says:

    I first became aware of your hospital because I value Dr. Bryan Vartabedian. He has been a Leader and a Role Model for physicians who use Social Media. He has become an informal mentor of mine and I’m honored that we have met and have shared several conversations.

    You have just given us a powerful case study of why social media matters! The interview with the physicians, this blog post and especially the beautiful picture of Audrina will be shared all over the world. You have given hope to parents who have not yet delivered their child that indeed there just might be some hope.

    I honor every single person who helped in their own unique way to not only help Audrina but also had the courage to share this story.

    Social Media helps the world become smaller, more connected and gives us all hope.

    Warm Regards,
    Lisa Fields, M.S.
    AKA @Practicalwisdom

  9. Bethany says:

    I’ve had brain surgery at the TCH in Fort Wort, TX and Houston, TX! I always have a good time when I go to MRI’s and EEG’s! Love TCH!!!!! Dallas, Fort Wort, and Houston!!!

  10. Aleksandra says:

    God bless you, Little Princess! Lot of Polish people pray for Your health. Greatings from Poland!

  11. Julie Gardner says:

    She is just adorable! Much love and prayers going your way from the recruiting team at SMR/LoanStar! :)

  12. Irene Stumpf says:

    We are all praying for you and your family. She is beautiful and will be in our prayers daily.
    Your family at Select Management in Georgia.

  13. Nicole pickens says:

    God Bless y’all. Our thoughts and prayers are with you! She’s a beautiful miracle! All of us at Loanstar Title and SMR are praying!!!

  14. Teresa Barros says:

    God bless you, Audrina! From the bottom of the heart of a brazilian grandma.

  15. Pingback: See the Amazing Video of an Infant’s Heart Beating Outside Her Body and Hear From the Doctors Who Performed the Live-Saving Surgery — Chris Jones Media

  16. Diane Grayson Goloby says:

    I know this baby born with her heart on the outside of her chest should servive as did my great-grandfather’s patient back in 1908. He was a county doctor in Red River County Texas, Dr. William H. Grayson, student of a Mississippi medical school before the turn of the 20th century. He delivered a baby boy with this condition, gathered surgery tools and eisenglass. He performed the delicate surgery – without technology we have today – placing the eisenglass on the tiny chest, pushing the heart gently down, and the very delicate skin around the eisenglass. He managed to close the skin over the heart, which eventually grew over. The boy grew to adulthood under the watchful eye of the country doctor, and attended school. In his 22nd year, however, the excitement of his graduation proved too much for the young man, and he suffered a heart attack and died. Dr. Grayson was unable to attend the event, and always felt that the boy would have survived had he been present.
    There is an article in the Paris, Tx newspaper dated 1939, about this birth and the survival to adulthood, and my great-grandfather, Dr. Grayson. I always see articles and hear news about babies being born with this condition and not surviving or surviving for only a few years. There was one other listed as living 23 years in the ’90s or so, but it was a great fete to have happend at the turn of the last century. That’s why I believe, if you can use something similar to eisenglass, or surgical mesh, something that would keep the skin around the heart – modern materials – as delicate as baby’s skin is – there is no reason this little girl shouldn’t survive.
    Diane Grayson Goloby
    great-granddaughter of Dr. William H. Grayson, Bogata, TX 1859 – 1942

  17. Lukasz Starowicz says:

    Thank You for doing great job at TCH !!
    I wish all the best for the baby !
    greetings from Armenia!

  18. Pingback: See the Amazing Video of an Infant’s Heart Beating Outside Her Body and Hear From the Doctors Who Performed the Live-Saving Surgery |

  19. gabby torres says:

    thats good she survived i thank tch for helpeng me also with my diognoses of lupus and the fact that i have a blood clot in my heart may god be with you guys:)

  20. Anna says:

    Audrina! Good luck, Sweetie! You have beautiful eyes and beautiful smile. You will live long and happy live, I am sure about it!
    God bless doctors! Lots of love and positive energy to parents :-)
    Hugs and kisses from Poland!

  21. Pingback: Audrina Cardenas, la niña que nació con el corazón fuera del pecho En positivo

  22. Pingback: Medical Miracle: Doctors optimistic on survival of baby born with heart outside body (Warning: Graphic Content) | YNaija

  23. Leticia says:

    My name is Leticia, and I’m Brazilian. I was born with a rare heart disease, and doctors said I was not going to make it. Well, I’m 29 years old now, and I have a perfectly normal life, excepting from medicines and constant care to monitor my condition. I’m praying for this little girl to recover soon and grow old. Congrats to the doctors!

  24. Pingback: Baby Born with Heart Outside Body

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  26. Pingback: Baby Born with Heart Outside Body Makes Medical History | Banoosh World

  27. Dee dee pawlik says:

    Hi ashely

    So happy for you and the baby. She looks so beautiful. Let me know if i can help in any way.

  28. Pingback: Baby Born with Heart Outside Body | Your Healthy Child

  29. Jo Ann Richmond says:

    Audrina could not be in better hands than those of Dr. Fraser. He performed all three of my granddaughter’s heart surgeries and she is a thriving and healthy five-year old after having her first surgery at 10 days old, second at 6 months, and just recently her third and last at 5 years. She lives in Round Rock and had it not been for the diagnosis of her cardiologist here in Austin, Dr. Johnson, and the amazing series of surgeries to correct her hypoplastic left heart syndrome by Dr. Fraser, she would not be with us today. I am hopeful Audrina’s outcome will be as amazing as my granddaughter’s. It is a hard road but it is well worth it. Best of luck!

  30. Jeremy & Cybil Contreras says:

    On 18 Nov. 2010, my wife & I were blessed with our little boy, Garett Jonah Contreras. Little did we know what lied ahead. Garett was flown 1st class, via the kangaroo crew, from our hometown of Lubbock, TX to Texas Children’s. This all came as a SHOCK due to the missed diagnosis of 3 congenital heart defects before birth. Garett was born with an 1. Interrupted Aortic Arch(Type A) 2. A-P Window 3. ASD. Under the direct care of Dr. Dean McKenzie & the entire surgical staff, Garett underwent an 8 hr. operation at 4 days old. As registered nurses that work in the operating room, this was an unreal situation to experience. The exceptional care started with the kangaroo crew and continued to the NICU thru the OR and extended to the CVICU. Houston became our 2nd home for the next 3 weeks. Everyone that we came in contact with, from employees of Texas Children’s to volunteers at the Ronald McDonald’s House(Holcombe Blvd & Cambridge St), welcomed us with great compassion and hospitality. After a follow up in Sept 2012., all test revealed that we have a healthy, vibrant 2 year old with a perfect heart. Words cannot express our gratitude for the care that was shown to our son & the impact that Texas Children’s Hospital has made in our lives. As we were told the day of Garett’s surgery by another worried mother of an 18 yr old congenital heart defect surgery survivor, “one day you will look back on this experience as a distant memory.”. Keep ur FAITH STRONG!!! Your in a WORLD CLASS FACILITY!!!

  31. Pingback: Newborn Heart Defect Screening Awareness Day! « One Tired Mama

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  33. Nicole Riley says:

    Thank God for the doctors who did everything they could to save that beautiful baby. It is truly a wonderful blessing. May God continue to bless and watch over the baby. I wish you and your family a very Merry Christmas and a Happy New Year….bless you all!!!

  34. Pingback: Brave heart: Baby born with heart outside her body leaves hospital after miracle surgery (See Photos) | YNaija

  35. Nelmar Junqueira says:

    Great job Dr Charles Fraser , God bless you and this beautiful babe …Dr Junqueira .

  36. Pingback: Baby born with part of heart outside of body « westminsterprego

  37. Dari says:

    Hello, help me please. I am from Russia. my daughter’s heart on the outside, tell me how can I send documents to doctors who had the surgery . almost 5 years now .her name was Bathsheba. we all denied the operation. if someone of you knows anything please help us with daughter.
    here is my mail genschinakoshka777@yandex.ru

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