{"id":91837,"date":"2016-04-13T08:51:28","date_gmt":"2016-04-13T12:51:28","guid":{"rendered":"\/news\/?p=91837"},"modified":"2016-04-15T13:01:09","modified_gmt":"2016-04-15T17:01:09","slug":"baby-girl-denied-new-heart-because-she-might-have-disability","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/baby-girl-denied-new-heart-because-she-might-have-disability\/","title":{"rendered":"Baby girl denied chance at new heart because of developmental disability"},"content":{"rendered":"
<\/div>

Stephanie Parra was 32 weeks pregnant when doctors handed her devastating news. Her baby girl had a heart defect that was so severe they didn\u2019t think she would live more than a few hours after birth. They told Parra that she should consider abortion.<\/p>\n

\u201cI reminded the doctor that I was 32 weeks,\u201d she explained. \u201cBut the doctor said that my baby was considered defective and that you can terminate up to 38 or maybe 39 weeks. I told her, no, termination wasn\u2019t an option. We were going to continue the pregnancy.\u201d<\/p>\n

Parra was determined to help her daughter anyway that she could, and give her the best chance possible.<\/p>\n

On December 8, baby Lily was born at 37 weeks gestation, weighing 7 pounds and 11 ounces. She was blue.<\/p>\n

\u201cShe got intubated,\u201d said Parra. \u201cI got to see her the next morning at 4am. She was the biggest baby on the NICU unit.\u201d<\/p>\n

An MRI showed that Lily\u2019s brain was smaller than it should be but doctors attributed that to her early birth and her heart defect. The more pressing matter was that Lily needed heart surgery, and she was given two shunts in her heart to help her survive. She did well after the procedure and at one-month-old she was able to go home, surprising the doctors who said she wouldn\u2019t live more than a few hours. However, after one week, her parents noticed something was wrong.<\/p>\n

\"levatino-ad-LAN\"<\/a><\/p>\n

\u201cIt looked like she had the hiccups and we worried she was having a seizure,\u201d said Parra. \u201cWe took her to the ER and while my husband packed the diaper bag, I started recording what she was doing to show to the ER doctor.\u201d<\/p>\n

They learned at the ER that Lily was in respiratory distress from a bacteria she had picked up while in the hospital which was now in her lungs.\u00a0 Lily was readmitted to the hospital and intubated. From there, things went from bad to worse.<\/p>\n

An echocardiogram showed that Lily had mitral valve regurgitation, in which some of the blood leaks backward through the valve each time the ventricle contracts. In addition to her other heart problems, this influenced the doctors to determine that she would need to be listed for a heart transplant.<\/p>\n

While preparing to put her on the list, doctors performed an MRI which showed that Lily had fluid on her brain. The doctor, Dr. Abd-Allah, determined that Lily would no longer be able to get a new heart.<\/p>\n

\u201cDr. Abd-Allah said she wouldn\u2019t be a candidate for a heart transplant because she would be developmentally delayed,\u201d explained Parra. \u201cSo, of course, that made me super furious. I couldn\u2019t believe what he was telling me so I said, okay, now I know what I need to do.\u201d<\/p>\n

Parra had Lily\u2019s medical records sent to Dr. Holder, the doctor for the Special Olympics, and to a doctor at St. Joseph\u2019s. She knew that what Dr. Abd-Allah was doing was unjust, and she needed to help her daughter.<\/p>\n

In the meantime, Lily\u2019s lungs were struggling. Doctors attempted to extubate her three times and told Parra that Lily probably wouldn\u2019t be able to breathe without the machine. While looking through the medical records, Parra noticed that it stated if Lily were to have a new heart, her respiratory problems would improve.<\/p>\n

Within days, Parra and her family had an online petition<\/a> started to gain support for a transplant. A few days later they had a family meeting. Dr. Abd-Allah didn\u2019t attend, but another doctor was there. He told them that the decision to not list Lily for a new heart wasn\u2019t just because she might have developmental delays.<\/p>\n

\u201cHe said she had kidney failure. He basically took the air out of me,\u201d said Parra. \u201cThe next day I went to see Lily and I asked the nurse how she was doing on her new medication for her kidneys. The nurse said that Lily wasn\u2019t on any medication for her kidneys. I asked the PICU doctor, who said that Lily\u2019s kidneys were perfectly fine and that he didn\u2019t know what I was talking about.\u201d<\/p>\n

Parra doesn\u2019t know why she was told that her daughter had kidney failure –\u00a0though she mentions on her online petition page<\/a> that she believes it may have been a response to the growing outcry to allow a transplant for Lily\u00a0–\u00a0but one day she overheard the doctors and nurses in the PICU talking about how Lily had a 2p21 deletion, a syndrome of which genetic material from chromosome 2p21 is missing. Symptoms include failure to thrive, almond-shaped eyes, droopy eyelids, reduced muscle tone, and developmental delay. She was shocked since no one had informed her of this diagnosis.<\/p>\n

\"Lily

Lily Parra, Easter 2016 (Photo via Change.org)<\/p><\/div>\n

Doctors told Parra that because of this diagnosis, her daughter would have a poor quality of life and therefore, they would not list her for a heart transplant.<\/p>\n

\u201c[Dr. Abd-Allah] said, \u2018I don\u2019t have a bag full of hearts that I can give to everybody and I\u2019m not going to waste a heart on a kid who might have disabilities,\u2019\u201d said Parra. \u201cI told him, \u2018You don\u2019t know. You\u2019re not guaranteed tomorrow. A person you give a heart to could die in a car accident on the way home from the hospital or decide that life isn\u2019t worth it and start using drugs. Just because my child has disabilities doesn\u2019t mean I love her any less than any other mother.\u201d<\/p>\n

Lily is currently still in the hospital while her mother spreads the word about\u00a0the petition<\/a>, and works with Dr. Tim Shriver to try to find attorneys to help her. Each signature she gets will help her try to force the doctor\u2019s hand to list Lily for a new heart.<\/p>\n

\u201cIf I\u2019m willing to do everything and anything and give up my life so my daughter can have a life, then that\u2019s what I\u2019m gonna do,\u201d said Parra. \u201c[Doctors] shouldn\u2019t stop me from doing what I want to do for my daughter.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Stephanie Parra was 32 weeks pregnant when doctors handed her devastating news. Her baby girl had a heart defect that was so severe they didn\u2019t think she would live more than a few hours after birth. They told Parra that she should consider abortion. \u201cI reminded the doctor that I was 32 weeks,\u201d she explained. […]<\/p>\n","protected":false},"author":62,"featured_media":92329,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false},"categories":[7],"tags":[8344,8343,8345],"yoast_head":"\nBaby girl denied new heart because she might have a disability<\/title>\n<meta name=\"description\" content=\"The doctor said, "I don\u2019t have a bag full of hearts that I can give to everybody and I\u2019m not going to waste a heart on a kid who might have disabilities."\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/archive.liveaction.org\/news\/baby-girl-denied-new-heart-because-she-might-have-disability\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Baby girl denied new heart because she might have a 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