Posted on 04/19/2016 4:37:38 AM PDT by Morgana
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’t think she would live more than a few hours after birth. They told Parra that she should consider abortion.
“I reminded the doctor that I was 32 weeks,” she explained. “But 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’t an option. We were going to continue the pregnancy.”
Parra was determined to help her daughter anyway that she could, and give her the best chance possible.
On December 8, baby Lily was born at 37 weeks gestation, weighing 7 pounds and 11 ounces. She was blue.
“She got intubated,” said Parra. “I got to see her the next morning at 4am. She was the biggest baby on the NICU unit.”
An MRI showed that Lily’s 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’t live more than a few hours. However, after one week, her parents noticed something was wrong.
levatino-ad-LAN
“It looked like she had the hiccups and we worried she was having a seizure,” said Parra. “We 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.”
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. Lily was readmitted to the hospital and intubated. From there, things went from bad to worse.
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.
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.
“Dr. Abd-Allah said she wouldn’t be a candidate for a heart transplant because she would be developmentally delayed,” explained Parra. “So, of course, that made me super furious. I couldn’t believe what he was telling me so I said, okay, now I know what I need to do.”
Parra had Lily’s medical records sent to Dr. Holder, the doctor for the Special Olympics, and to a doctor at St. Joseph’s. She knew that what Dr. Abd-Allah was doing was unjust, and she needed to help her daughter.
In the meantime, Lily’s lungs were struggling. Doctors attempted to extubate her three times and told Parra that Lily probably wouldn’t 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.
Within days, Parra and her family had an online petition started to gain support for a transplant. A few days later they had a family meeting. Dr. Abd-Allah didn’t attend, but another doctor was there. He told them that the decision to not list Lily for a new heart wasn’t just because she might have developmental delays.
“He said she had kidney failure. He basically took the air out of me,” said Parra. “The 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’t on any medication for her kidneys. I asked the PICU doctor, who said that Lily’s kidneys were perfectly fine and that he didn’t know what I was talking about.”
Parra doesn’t know why she was told that her daughter had kidney failure – though she mentions on her online petition page that she believes it may have been a response to the growing outcry to allow a transplant for Lily – but 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.
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.
“[Dr. Abd-Allah] said, ‘I don’t have a bag full of hearts that I can give to everybody and I’m not going to waste a heart on a kid who might have disabilities,’” said Parra. “I told him, ‘You don’t know. You’re 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’t worth it and start using drugs. Just because my child has disabilities doesn’t mean I love her any less than any other mother.”
Lily is currently still in the hospital while her mother spreads the word about the petition, 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’s hand to list Lily for a new heart.
“If I’m willing to do everything and anything and give up my life so my daughter can have a life, then that’s what I’m gonna do,” said Parra. “[Doctors] shouldn’t stop me from doing what I want to do for my daughter.”
For your “death to America” ping list.
Has to be one of Obama buddies. “[Dr. Abd-Allah] said, ‘I don’t have a bag full of hearts that I can give to everybody and I’m not going to waste a heart on a kid who might have disabilities,’”
Only a Muslim doctor has a name like that and would say such a nasty remark.
Petitioning Transplant Board Loma Linda University Childrens Hospital
Baby Lily Needs a Heart
I can’t believe we’ve sunk this low in America but that’s what you get with combined with abortion on demand and Muslim doctors.
Abd-Allah tell me all I need to know.
Muzzie scum unwilling to put an infidel baby on a list for a new heart.
My thoughts exactly!!
There are limited hearts and a waiting list, I wouldn’t want to make the decisions even if they are based on the most viable outcomes.
I can’t believe we’ve sunk this low in America,
Why not the PC progressives are in charge.
http://www.freerepublic.com/focus/f-news/3422405/posts
Correction:
I can’t believe we’ve sunk this low in America,
Why not the PC progressives are in charge,just the beginning.things to come,below
http://www.freerepublic.com/focus/f-news/3422405/posts
Thanks M.
If the petition signers will cover the cost, then more power to them.
Well what would you do? Keep in mind that if the heart goes to this kid another kid will likely die.
The heartless doctor is a moslem..
but as Christians we know a heart specialist who will give Lily a new heart...if we only but ask...
He sent His Word and healed Lily ...Psalm 107:20
Be healed Lily, and made whole in your heart, and every other part of you that is lacking, in the name of Jesus...
Correct that there are limited hearts and many on waiting lists. The median waiting time for a pediatric heart transplant at the Atlanta Children’s Hospital, e.g., is 7.4 months.
BTW some years ago I was in Hopkins hospital and picked up a newsletter that described what I though was a travesty. A black kid was given a liver transplant (at taxpayer expense) due to some disease he had. His momma spent her money on crack, dope, beer, cigarettes and lotto tickets and didn't keep up with all of the antirejection medicine the kid should have, so the liver transplant failed. SO, the caring compassionate welfare state gave him ANOTHER liver (thus condemning to death a second other child) so that the member of the privileged race could live. Well guess what. Same thing happened again. They were going to give him a third liver (an in the process let yet another non-welfare non-crack baby die) when the kid died. The argument that was made was that rather than directing the scarce resource (livers) to those most likely to take care of their new lease on life, welfare payment of the mother of kids should be increased so that they could afford the anti-rejection and their other comforts - not sure how that debate ended. After all the welfare state can't let black crack babies die to keep other kids alive can it?
Organs need to be matched to the patient so if there is a heart that only matches this little one, then no one else is going to die from not receiving that heart or one could argue no matter who receives the heart there maybe someone else who needs it, such as Lily or even a third or fourth child who are going to die. Ridiculous argument not to give her a matching heart. It’s amazing that with the birth of Trig Palin, the left has shown their true colors of hatred of those with learning difficulties and handicaps. I wonder if Ms. Rotten’s new grandchild were to be born with downs or some other medical problems, if suddenly the left would change their outlook and become compassionate or would they suggest a post birth abortion? Feeling angry, life is unfair, compassion is necessary.
Organs need to be matched to the patient so if there is a heart that only matches this little one, then no one else is going to die from not receiving that heart or one could argue no matter who receives the heart there maybe someone else who needs
Nice straw man, but where in the article did you see that this heart matched this kid and none other? It's POSSIBLE (but not likely) that this is the case, but much more likely is that there are other kids that his heart will match, sorry no sale on your phony compassion.
If that where my daughter, I would ask the good doctor if he could fly, because if you do not put her on the list for a heart transplant I am going to throw you off the roof of the hospital.
Yes, I would in a NY minute.
Amen
I understand what you’re saying. I work in a pediatric hospital that does organ transplants and unfortunately organs must be rationed. Lots of thought goes into who gets on a list. Co-existing disease is certainly a factor. My suspicion is that this child is very sick and with the chromosome deletion has more than just a “learning disability”. We have transplanted children with Down Syndrome so I think this kid has other things wrong with her that the parents are either in denial about or unwilling to admit.
The story you related about the Hopkins kid has happened in my career. That’s why there’s now a social services person as well as a psychiatrist on our transplant team that have input into who gets listed. Children with parents who have a history of non compliance certainly have a strike against them because of that. It’s unfortunate but has to be because, as I said, there’s not an abundance of organs just laying around.
I wouldn't want to make the decisions, but the knee jerk reaction from the yahoos on this thread that the doctor should be thrown off the roof or that he didn't put the kid on because she's a Christian are just the braying of fools. The sad fact is that there simply aren't enough organs available. Each one is the result of the death of the donor, and putting one recipient ahead of another can cause the death of someone further down the list. It therefore makes sense to put the recipient most likely to be successful ahead of one that has other serious health problems.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.