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:[[{"type":"media","view_mode":"media_large","fid":"68931","attributes":{"class":"media-image","typeof":"foaf:Image","height":"330","width":"540","style":""}}]] 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