A Little Girl Died Today

There is a little girl named Annie Golden who died today.   She was a beautiful soul with a smile that could light up a room.   She died because she didn’t get a heart transplant. She died because she was not thought “worthy” enough to even be put on the list. Annie had Down syndrome.   This cognitive disability would prevent her from even being put on the transplant list.   My heart absolutely breaks for the family of this girl.

Little Annie Golden

You see, I have a little girl with Down syndrome.   She turned 6 months old yesterday.   My little girl’s name is Joy.   She is the youngest of my four children.   The last 6 months have changed my life in so many ways.

My journey started as most parents who have any child with special needs. It started out with ignorance. Like most people, I had been around people with special needs, but I’d never been a parent of a child with special needs, nor did I have a close family member with special needs to know and love.

So, in the beginning when my precious girl was born, I was ignorant. I only knew what I had been told by the culture at large. I only knew fear. Fear for the future. Fear of what others would think.   I had fear of my life being over or completely re-directed.   Fear that my child would be nothing more than a despised member of society by the culture at large.

LIES!! These were all lies!

After 6 months, I CANNOT adequately express how much joy, love, and hope my little Joy has brought into my life and the lives of the people around her. She is every bit as valuable as any of my other children.   In fact, I often feel sorry for my other three children because anyone who meets Joy is such a fool about her.   She is full of life!   She is full of love!   SHE IS A GIFT!   She is just how God wanted her to be. I wouldn’t change anything about my little girl. As a dad I would do whatever is in my power to help her if she was sick. I would try to move mountains to get her a heart if she needed it.

I was ignorant about how wonderful my daughter would be. I was also ignorant to a heinous evil that is going on towards people with Down syndrome.

They are being MURDERED!   They are being systematically eliminated by those who are called to protect life. It seems one of the main enemies of little children like mine are the very doctors who take an oath to protect and to save lives.

The reality is that the blood tests performed in a woman’s pregnancy are solely done so that the mother can choose to terminate her baby, and 90% of the time they do in the case of Down syndrome. So many times my wife and I have heard stories from parents of children with Down syndrome that their doctors actually advised an abortion or presented it as an option when they did not present it as an option before the test.   It is obvious that these children are not deemed “worthy” by the medical community as a whole.

Back to little Annie…she died this morning. It seems that the deciding factor to her being able to get a heart transplant was her cognitive ability. Did she have other factors? I am sure she did.   Anyone who needs a heart transplant will have some other factors, but once again, it seems the deciding factor was her IQ.

So now it seems an IQ test is needed for who lives and who dies. If you can score high enough on a standardized test then you are valuable enough to be given a chance at life. This is sick and it is wrong.

This is an actual CIVIL RIGHTS issue.   People with Down syndrome did not choose Down syndrome. It is part of their DNA. Where are the parades of people crying out that the murder of innocent children with disabilities be stopped?   Where is the outrage over little ANNIE?

What is valuable?

American Culture values net worth, IQ, and sex appeal. The God I serve values something different.   Here is what He says.

“1 Corinthians 13:1 If I could speak all the languages of earth and of angels, but didn’t love others, I would only be a noisy gong or a clanging cymbal. If I had the gift of prophecy, and if I understood all of God’s secret plans and possessed all knowledge, and if I had such faith that I could move mountains, but didn’t love others, I would be nothing. If I gave everything I have to the poor and even sacrificed my body, I could boast about it; but if I didn’t love others, I would have gained nothing.

Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out. Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.”

Joy

My daughter may never have the highest score on the ACT. Little Annie may have never won the Spelling Bee, but I can promise you that my daughter and thousands of other children and adults like her with DS have been given an extra dose of what God says is most important: LOVE!!   I propose to you that just maybe those whom the culture is murdering are the ones we NEED THE MOST

JOY

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56 thoughts on “A Little Girl Died Today

  1. Annie’s passing is a terrible, terrible tragedy. However, she was not denied a transplant simply because she had Down syndrome. As heart-breaking as this story is, it is also heart-breaking that so many are giving the impression that having Ds is an immediate disqualifier for a transplant. We all need to sign up as donors. The need for organs far outweighs the availability of viable donors. Please sign your donor card today.

    1. Stacey, I appreciate you putting out the information on what the law is. From what I can tell reading over of number of sources about the story. It was not stated that she was disqualified because she had down syndrome but because of her cognitive ability. It seems they were playing word games. Any way I totally agree with you that we should get our donor cards so that more organs are available for those who need them.

    2. I agree that more people should be organ donors. However, you mention Down syndrome not being the only factor in why Annie was denied the transplant. Are you aware that patients dying from heart issues experience a wide range of symptoms? What other symptoms are you referring? I do not know of any other issues she had aside from her heart and the possible learning disabilities associated with Down syndrome. I think so many people are uneducated. I once was as well, but thanks to medical advances, heart problems and other physical issues can be treated now – so people with Ds live much longer than just 15 years ago. Not to mention, scientist have identified the genes responsible for the cognitive deficits and are trying to understand how these genes influence cognition, and are working on treatments that will turn down or turn off the activity of the extra gene(s). Currently only mice have been tested – but they have answers and are working on studies involving the brain structure that is affected (learning and memory, etc) so Ds people can be treated. I’m learning as I go – but regardless – before all the science and research … these are children of God. How can anyone decide who is fit for a transplant and who isn’t? There are alcoholics getting liver transplants (I’m not against this … I’m just saying)! I have a daughter with Ds that I expect will go to college and live longer than I will! This just makes by blood boil. I have been crying on and off all day thinking about sweet Annie. I’ve been following her and am so disappointed with all the attention to this story they still did not help her. Regardless, she may have had other health issues – but nothing that would have taken her life!!! Therefore I respectfully disagree with you. This is a Civil Rights issue and it’s wrong! I love the story written by Pastor Rick Hermann – reminding us that God values something different – love – and little Annie for sure had an extra dose of that. And although I do not understand – I know the Lord did not make her sick and he has a plan and purpose, so I trust in His faithfulness. I pray that He will shower this family with His presence and give them peace as they say goodbye to their angle as she comes home to His kingdom.

      1. it was not solely based on her having DS. While preparing for her second OHS it was discovered that she had Pulmonary Hypertenstion and that is why they couldn’t fix her heart. Yes I have a child with DS and I completely feel for this family, but please know this is not the SOLE reason. I have contacted the head of Transplant at UofM and they said this is absolutely not true. Many factors play into this. Tragic yes, but NOT NOT NOT the only reason.

    3. No…she was flat out denied because she had Downs syndrome, no other reason. How do I know this? Because my friend lost her sweet, precious 7 year old daughter to liver cancer. You see, she had a 100% chance of survival if she had received a liver transplant but because she was mentally retarded her parents were told she would never be eligable to be put on the transplant list. No other reason. Because she would never grow up to be “a functioning member of society” she could never possibly receive the gift of life, a complete cure. That was reserved only for others with a higher IQ. Did I mention that if she received a transplant she would have been 100% cured? My friend appealed it, of course it didn’t do any good. So instead her sweet baby girl had to endure pain and suffering and eventually her little body couldn’t fight anymore (and damn that little angel fought HARD), for over 2 years!!!

      So yes, I know for a fact that even if a beautiful, healthy organ was available and ready to help, the ONLY reason why it wouldn’t have happened was because Annie had Downs Syndrome. It’s genocide, pure and simple.

    4. Your daughter is beautiful and my heart breaks for the family of Annie. DS children should not be excluded from anything because of something they had no control over. Why do they give hearts to older people? They are going to die soon anyway, and by the way I am 64 so I’m not against any age etc. this little girl had much to offer in her life time – most of all – love. What about children who are autistic?

    1. I really don’t want to make specific comments about this one little girl. There is information readily available that there were other factors that played into her not being eligible for a transplant. I just think it’s important that we, as a community, support one another with factual information. The sad reality is that there is a much greater need than available organs. If someone feels that they have been discriminated against for Ds, I would urge those people to reach out to their local Ds orgs or the NDSS for support and advocacy.

    2. Oops meant to reply here: I really don’t want to make specific comments about this one little girl. There is information readily available that there were other factors that played into her not being eligible for a transplant. I just think it’s important that we, as a community, support one another with factual information. The sad reality is that there is a much greater need than available organs. If someone feels that they have been discriminated against for Ds, I would urge those people to reach out to their local Ds orgs or the NDSS for support and advocacy.

    3. Beaky, I, too, have a child who has DS. My heart is breaking for Annie’s family, her dear parents, and her sisters. What I am wondering is if it would have been possible to locate a heart that was compatible with little Annie, since she has the unique cellular make-up of trisomy 21?

  2. Thank you for sharing your story and for posting about what happened Annie. This situation has affected so many people, myself included. God bless sweet little Annie who is now in His arms.

  3. Stacey, This is an explanation of the problem: The way the law is written (as I understand) it allows people to be denied transplants…based on a number of factors supposedly deemed by the doctors. These issues come up again and again because of the “cognitive limitations.” There’s another case I read about where the doctors tried to deny the refusal of the transplant due to T21 (T21 = Trisomy 21, AKA a type of Down syndrome) saying he had a compromised immune system, mom fought, appealed, had independent evals, the boy in fact had no compromised immune system. The doctors still denied it based on other factors, they didn’t hold water either. So, while there is no Law written on the books that says specifically “no,” the laws that are written are being universally applied to our children and they are routinely – and legally – denied transplants. I have informally searched – I wonder if someone more savvy could track down if a person with T21 has ever received a transplant of any kind in the US…I haven’t found any.

    I would imagine the history of people with T21 being thrown away and being allowed to rot in institutions would definitely preclude them from receiving any as recently as mid 70’s. Then the rest of the 70’s into the 80’s was spent trying to convince the world that people with T21 had a place in it, which leaves a relatively recent history of 20-25 years in which to search. This is also combined with the reality that the blood tests performed in a woman’s pregnancy are solely done so that the mother can choose to terminate her baby, and 90% of the time they do in the case of Down syndrome. It is obvious that these children are not deemed “worthy” by the medical community as a whole.

  4. Rick,
    Your post is a reflection my own life for the past 17 months. My little girl is named Hope and she has Down syndrome. She is the greatest gift I never knew I wanted. She has taught me so much about resilience in the eye adversity, while sporting a smile.

    I could not agree more with you about this being a civil rights issue. Thank you for this post.

  5. Well, I am going to consider myself a expert here. I am unbiased on both sides because I have a daughter with special needs, and I also understand the heart translplant criteria because my daughter has a CHD and spent countless months in CHOA’s Heart unit. Obviously like any other special needs parent, you are writing from your heart and not from fact. You states “It seems that the deciding factor to her being able to get a heart transplant was her cognitive ability. Did she have other factors? I am sure she did. Anyone who needs a heart transplant will have some other factors, but once again, it seems the deciding factor was her IQ.” Key words, “it seems” Not “I know” I personally know of a special needs child who did receive a heart transplant. The heart transplant list, is arranged from the most in need at the top and then tapers down to the less in need. Of course if they are on the list, they NEED a heart or they would not be listed. There are so many factors that go into even getting on the heart transplant list. Just because you need one, does not mean you are a candidate to get one. There was a story a few months ago on the news in Ga about a teenager that needed a heart and his family was upset because they would not list him on the transplant list. When it came down to it, they would not list him because the boy refused to take his medications. They will not list him, because there is no point. If you get a heart, you have to take care of it or its wasted. There is the little girl I am following now named Grace. They have found that Grace has more antibodies in her body, then most humans do. They think she got this way because she got her moms antibodies at birth, and because she has elevated antibodies from blood transfusions and because her body has made extra antibodies after her first HLHS Norwood procedure. The problem is, it is very hard to find a matching donor for her with so many antibodies. Her body will want to fight off EVERYTHING that that heart has. If they give her a heart that has anything that her body fights, it will reject the heart. When they list kids on the transplant list, they go on the list in order of need. The child that needs the heart the most, is obviously up at the top of the list. A lot of steps go into listing a child on the transplant list. The only thing that is listed that mentions mental stability, to me seems more like adults that are severely disturbed and won’t take medication. Its listed like this. Active mental illness that interferes with medical treatment compliance. Psychosocial instability, lack of social or family support, ongoing noncompliance with medical treatment. To me, a child with down syndrome, usually has a tremendous family support, that would help with medications to take care of that heart transplant. It’s more for those who are maybe unstable like someone with schizophrenia. When a heart comes in, it does not even mean that number 1 gets it. Yes, they are the child that needs it the most, but it has to be a match and it has to meet all the criteria for that child to medically accept that heart before they get it. If they do not, they go to the next in need. Parents on the heart transplant list carry a pager with them, so if a heart comes in they are called on right then. Like in Grace’s case, she is having to take chemo to kill off her B cells to try to kill reduce some of her antibodies. If they put a new heart in her today, her body would reject that heart and it would not beat even with all the anti rejection drugs she would get. So, in saying ALL THAT, I am guessing there are a whole lot of factors that went into this child being listed, or not being listed other than her having down syndrome. She might have been on the list, she might have not. I do understand why you would write it from his heart though. It would be a little different if the parent of this child wrote the story, then you would have all the facts. My guess is, if that was the deciding case, there would be a lawsuit for that being the only reason. Last year at Egleston in Atlanta, they set a record for heart transplants in a year. I think it was only 4 but that was a record!!!! So now you see, why they have criteria for keeping those hearts alive. Here is a list of the criteria for going to the heart transplant list. Not to mention the exams that are involved to make sure the child is not also “too sick” to handle it. http://www.muschealth.com/…/heart-transplant/criteria.htm

    1. Jennifer, I understand what you are saying and I know there are many factors that go into the specifics of a heart transplant. Surely, I do not know all the factors going into little Annie case. However the basis of my blog was to point out a human rights issue in general as to how the medical community views people with DS. Specifically doctors recommending abortions and the high abortion rate of children with DS. Annie story seems to highlight the problems outside the womb. While I am sure none of us but her parents and doctors know all the facts, it is clear that there was an issue in this case that needed to be paid attention too.

      1. Our daughter with DS is anticipating a kidney transplant in the future. While we have a living donor, we were told she would be listed just like any other child. The hospital we went to made a point to say that they do not use DS as a consideration for transplant. This DOES happen, and there are cases documented.

      2. I’ve been in the medical field for 10 years now. I’m on a transplant team and have sat on the board of ethics in the past. I’ve seen cases where they’ve denied a person because of DS. Some doctors will even go as far as fabricating a reason to not transplant since they can’t deny a patient strictly because of DS. It’s absolutely wrong for them to do this but don’t think for one second discrimination doesn’t go on in the medical field.

  6. I have been following sweet little Annie’s story, and it is in fact that she didnt recieve a heart transplant because she has Down syndrome. I have a daughter who is 9 her name is Leila, and I can’t even imagine the pain and sorrow the family is going through. Im on a mission to stop this law and and demand our children not be denied an organ transplant because of Down syndrome! In honor of little Annie and all other children with Ds who have been denied the right to live.

    http://www.change.org/petitions/president-of-the-united-states-why-are-children-with-down-syndrome-not-considered-for-organ-transplants-2?utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_mobile&recruiter=111447270

    1. Well Pastor Rick, I have spent my whole life in church and I would have to disagree with you. We found out at 14 weeks that my daughter had a cleft lip and palate and a hole in her heart. Blood test from an amnio confirmed that she had a balanced translocation of 2 of her chromosomes. We were told they did not know exactly how it would effect her. This was at 22 weeks. We were given the facts they had as specialist, of what could be the worst and the best case senarios. Yes, some doctors might push abortion, but that is a small amout of doctors. The results of amnios and of neonatology testing educate you, and begin preparing you for what is to come. We learned at 34 weeks that my daughter not only had a hole in her heart, but had Tetralogy of Fallot. 4 different defects of the heart. I had her at 36 weeks. These test let us know there was a problem, prepare us emotionally and educationally, and also allowed special cardiologist to come in at 2 am when they delivered my daughter to give her the care that she needed. If I had not had those test, we probably could have lost her right then and there. Anyone who has been honored to know a child with special needs knows, their quality of life is not any less. They exude love!!!! Am I for abortion? NO I am not. I would not have one for any reason other than the chance of me losing my life from the issues, and leaving 2 children without a mother. Is it my place to pass judgement on others for their choices? No it is not. It is not yours either. That will be worked out between them and God in the end. I believe you sadly used this story about Annie not knowing the facts of why she was denied a heart, to have a wider audience for your stance on abortion.

      1. I have read Annie’s story now. It sees she also had a lingering lung issue too. I believe this was probably the reason she was not listed. Also it says if you have a hard time reading written material that you might not be listed because you will be on 10+ meds after transplant. Her family is foreign, and might could have a hard time understanding English. I just gather that from their post.

      2. Ditto on the prenatal Dx of Ds and TOF for my daughter… And the prenatal scans helped them learn things about how the defect developed and changed in Utero which allowed her surgeon to develop a new way to repair the babies with this anatomy. If you believe God as creator, then he also created science, surgeons, tests and heart defect repairs! It all depends on perspective… Prenatal testing can save lives.

  7. I have a 17 year old son with DS who is pacemaker dependent and been through 3 open heart surgeries the most recent this past Dec 2013. I would give my own heart to him if it meant he would live. I couldn’t imagine my life without him. He might not understand everything in school , but the things he does understand he is very smart with. He shows more love to a stranger and has taught me so much, and that is the way God wants it to be. They are God’s special children. My heart so breaks for this family. Thank you for posting this story.

  8. Informative article on transplants for individuals with disabilities. According to this article there has been a successful heart/lung transplant in a young girl with DS. She died 16 months after the transplant because of adverse reactions to a medication she was taking in relation to the transplant. Good read.

  9. I have been a special needs’ teacher for 15 years. This makes me so sad to hear! This special needs children have touch my heart in a very special way. They give me a daily reminder to not take things for granted. They work so hard at pleasing you, which is a great feeling. These children are the definition of resilient. My life is forever change because of these special souls. You don’t know what you are missing turning your back on these prized children. Praying for your family and the precious little girl.

  10. The way the United States treats children is outlandish. We talk about how important children are to each of us, everyone will be there for a little while when the baby is so young….but then our true love and compassion seems to where off. We don’t emotionally support families who have children with special needs. We allow children to be abused both physically and emotionally and do very little about it. We have too many issues with taking care of the children of our country….we always say the children are our future….but they don’t protect them to make it to have a future.

  11. Please out of respect to this little angel, stop and pray for her family. They do not need all this controversy but desperately need to know that out there, there is a lot of people praying to God for peace and comfort.

  12. I have a son with DS and has had open heart surgery. I offer no opinion on what has been said, just my love and prayers for Annie and her loved ones. I never had the privilege of meeting this angel but my soul hurts as if I had. I pray for healing for Annie’s loved ones, you are in my thoughts. May God bring you loving comfort and peace.

  13. Just want to say this story touches very close to home with my family, mt wife and I have a 4month old son with downs and a cousin whose daughter also has it, We are very sorry for this familys loss and are passing this story around to radio stations and friends and family everywhere, may their daughter rest in peace, thank you for your time and we will keep them in our prayers

  14. How did you hear it was simply because of her DS? She had multiple other medical problems, a big one being pulmonary hypertension. That alone would have disqualified. It is against the law to deny a person an organ simply because if DS. As sad as it is, she wouldn’t have been able to be listed with her other problems. The process of qualifying or a heart is long and complicated, and all the cards have to align perfectly to be accepted. Rest in peace sweet girl, but people need to stop saying she was denied because of her DS.

    1. For those who want to say she was denied because of other issues, it is easier to believe that is true and that the world we live in is fair and just; but, do a search for “down syndrome organ transplant” and you will see multiple heartbreaking accounts which detail that our loved ones with an extra chromosome are in fact being denied simply because of an intellectual disability. Denying the issue exists does nothing to correct the issue in the future.

  15. I am the parent of a child who was born with serious heart defects and had 3 heart surgeries before she was 3 years old. She was also born with a brain condition, called Agenesis of the Corpus Callosum, which causes some delays and speech issues. But, she is as smart as a whip, plays piano by ear and can completely fix our computer. Our school district labeled her “retarded” because they had never heard of ACC and had no idea how to teach her. They wanted her in life skills. She is now homeschooled. She reads, writes, tells time and loves math! She would be denied a heart under this because she is not “typical.” Is that fair? How about the two month old who receives a new heart? Who says that they will be “typical” when they get older? Shame on anyone putting labels on our children. They all deserve a chance to grow up.

  16. Not reciving a transplant because you have Ds and wont be a functioning member of society is insane!! I have seen Mr and Ds people who work and take pride in their work…and have more love than 10 people I know put together!! We don’t have to worry about them stealing from you or hurting you…..but hey government…lets keep supporting people who have no issues at all and could be functioning members of society…keep giving them hand outs because they are unemployed and have a addiction to drugs and or alcohol. I know that she will have the hope of a resurrection and will be loved and give love again in her perfect new body and heart!

  17. Here in the UK before my daughter was born, unfortunately DS was used as a factor for not receiving a heart transplant or in deed medical care because people with DS were deemed as having no quality of light to it was better to ” let them go” Thankfully those views have changed now which I am particuarly relieved about as my daughter ended up having open heart surgery at 8 weeks, She is now 11 years old and I certainly wouldn’t have wanted to ” let her go” She has a good quality of life and she is a total star and touches other people in a way I cannot begin to even explain

    Unfortunately in the UK we still have a long way to go to get rid of people sterotyping people with DS and due to advances in medical testing if parents have a positive test for DS there is a 90% termination rate, yes thats right 90%. We need to get that changed as so many people do not have the facts, how do I know this, because I run a support group for familes with DS and we have a lot of people contact us who have being given a positive result who really don’t know the facts. It is everyone’s right to choose but to chose without being given proper facts is really no choice at all

    Going back to poor little Annie, it is sad to read that she didn’t get the chance to get a heart, I read in the comments that other factors may include that her parents didn’t understand English in order to give her the medical care she needed after transplant? That being the case I’m not sure which is the sadder story, the fact that she was denied through her DS or that her parents didn’t understand English? Whatever the true factors are behind this story we still have to unite together and think of her parents as there is nothing worse than losing a child and my thoughts go out to them and their family Rest in peace little Annie and go and dance with the angels xxx

  18. I understand how heartbreaking and tragic this is, but as i read and reread the story and the comments, I keep coming back to a simple truth: there are many people who need transplants. There are few transplantable organs available. Bioethicists and doctors and people like us struggle with the questions of how to utilize an incredibly scarce supply of transplantable organs in a way that best serves not just the individual or the individual’s family but also the community and the world. That’s a monumentally difficult task and one I am very confident no one takes lightly. I would never want to be the physician who has to tell a family ‘no’ because the message the family hears is from their heart and from a place of pain: “Not good enough for transplant”. But no doctor, we hope, ever said that and the laws and the rules that doctors, transplant coordinators and selection committees follow don’t rank individuals as people and decide on their personal worthiness. They only see criteria that were created with a lot of rational discussion, deliberation and certainly some heated debate, and this is by design. These are people with a difficult and occasionally painful and emotionally taxing job.

    This isn’t meant to make an aggrieved family or an outraged community feel better about a process that sadly and tragically could not save the life of a precious little girl. Nothing can do that. What I think everyone can and should do is get out their driver’s license and look for the organ donor symbol. If it doesn’t have the organ donor symbol on it, please consider becoming an organ donor. If supply of usable donated organs were higher, rules for who receives these precious gifts could be relaxed. I certainly can’t say this will result in universal approval of transplant – but I can say that a great many more people will benefit. And that’s a great thing.

  19. Dear Pastor Hermann, I am disappointed that you would use this little girl to advance your own agenda about abortion. How sad that you would do this.

    1. Mary,

      My point in the article was to show the value of children like Annie whether they are inside or outside of womb. What you think of me is of little consequence. It is my “agenda” to advance the cause of life. What matters is that children are being murdered and a much higher percentage of DS children are being aborted than those without DS.

  20. Welcome to the world of Obamacare, where the most vulnerable and those thought to be the weakest will be PTS by being denied care and left to die. That way, the self-styled elitist who designed this fraud can have everything for themselves.

  21. It has nothing to do with obamacare! SMH! Come on people!
    I’m not just saying there are other reasons she was denied just to say it. It’s true! Are there doctors that will try and deny based on DS alone, yes. But it is indeed against the law, so if your child is denied based only on that, you fight! The petition is invalid. It’s addressed to the president that has nothing to do with it. And it’s already a law that has been passed. I love how passionate special needs families are, but people are jumping the gun.
    I worked at the children’s hospital on the surgical unit where heart transplants happened. It is a very long, hard process to get approved. The point we should be pushing is organ donation. There are not enough organs for everyone that needs one! Because of this they only transplant organs that have the best long term survival rate. I had a child die right in front of my because she couldn’t have a transplant. Her parents spoke Spanish and were illiterate. Therefore she couldn’t be listed. I’ve seen kids denied because their families couldn’t move close to the hospital for at least a year post transplant. And yes, I’ve seen multiple children denied because of their high antibodies. The transplant world is a harsh, sad place!
    And you don’t know she was denied simply because of DS just because you have a friend that is having that problem!

    1. I don’t know if Joy died because she was denied a transplant due to her DS but I take the author for his word that it is so. Setting that aside, I do know firsthand that children with DS are denied transplants. I know that because I have a granddaughter who was denied. We sat in a conference room with her mommy and daddy and her other grandparents and were at first speechless followed by outrage when the doctor at a renowned children’s hospital said “unfortunately because your daughter is a trisomy 21 child she will not be a candidate for a transplant. There were NO other factors.
      I have worked in the medical field for many years and have seen people who are denied a variety of care because of their disability. It happens. It is WRONG, but it happens over and over again.

  22. My heart goes to this little girl
    So sad of what happen to her. I fully understand of what you &others family w/special needs children. I have a niece that special needs &I am a program director w/adult w/disability. I love of what I do day by day. I works w/all spectrum of dsability.

  23. Your daughter, Joy, is beautiful! My sister and grandmother are both named Ann, which means joy. I have noone in my family with down syndrome, but had a sweet childhood and high school friend named Johnetta who DID have it. She Das the friendliest, most outgoing, non judgemental person I’ve perhaps ever known. She was active in special Olympics and even worked at Kroger as an adult. Unfortunately, I’ve lost touch with her due to moves over the years, and knowing she is close to 40 at this time, I’m not sure if she’s still living.

    Stories like yours, having known Johnetta and the love of Christ, inspire me to be more active in speaking life and standing up for those who can’t. Thank you for sharing this today.

  24. Your right the doctors took an oath but only to be rich. They don’t care about u or I just the money coming in. They should all be let go because of their ignorance to children like annie. Or maybe because they are just stupid and need more learning because they don’t know enough. Or maybe they just need a dose of this on their family just to see how special these children are. Then maybe they will see how they have been murdering these little angels. My heart goes out to this family I’m so sorry and may annie rest in peace

  25. These comments gave more insight inito the case and the reasons for the medical decision and the purpose of the writer and the article. Mixing one families grief into your position on abortion and judgement is reprehensible. I am concerned about the testing and measuring of children or anyone for the purposes less about humanity and potential then for the ultimate use by others. That is of course wrong. However, in reading Annette’s comments I was struck by the ignorance and mean insensitive cruel way she struck back to punish as an instructive or useful message to the medical community. How Christian is that? Wishing them hurt and harm to their families as a way to learn? Learn what? I would suggest to Annette that when she needs a doctor or medical practioner and tells them she considers them to be a murderer she might find herself wishing she had been more human in her out look. The rage and zealot thinking and acts of the good religious person of any religion is what has kept people killing each other for thousands of years with the my way or the highway attitude. It is certainly not live and let live or respect the beliefs of others and live your own life without judging everyone else. My condolences to this grieving and heart broken family as the child and themselves are the victims. However, the details of this case have to be factored into the weighing of a life and death decision and that is brutal for everyone attached to this case or any other of such magnititude. How dare anyone take it to the simple position of their mind or heart as the only way as the way. An Rx for anyone who is so narcissistic or dogmatic would be to pick up a mirror and look into it and ask why you think your the center of the universe and can presume to interpret God’s words in only your thoughts and apply those words to everyone while negating their beliefs to be less important then your own. What is missing in translation here is your respect for others besides yourself. That is not anybodys God’s way. By the way, if you read this and it has caused you to be angry at my words I want you know how I have spent the last nearly forty years of my life, it has been as an active personal and professional advocate for the disabled.

  26. I have “2” Angels ^j^ myself. My son Brendan was 13 months 3 days old when he gained his wings in Sept 26,2006. Then I had a little girl named Katie Grace who was 3 months 3 weeks also gained her wings in Oct 2007. They both had a very rare syndrome called Galloway-Mowat. The minute they are born their kidneys start to shut down. They are also Mentally Handicapped as well. I was told by a doctor (She is a mother of 3 healthy children) To take my son home and let him die because he was Mentally handicapped, You see we were trying to get him big enough so my husband could donate a kidney so he would live. She told my husband to stop being selfish to think about our other “healthy” child and me his wife. She said we should just not even work to save our son. I know God wants me to forgive, But I hate her with every fiber in my body for being so unkind!! So if my children were “normal” they would have put him on a list even for a kidney. This doctor tried to block everything we wanted to try to save our son. The crazy thing was her husband was my sons kidney doctor and actually tried to help us save our son, I know he was loved by this doctor. Every child born with this it is a death sentence. There is only 40 cases worldwide since 1968. So in 46 years only 40 cases and I have 2 myself. I pray one day they will treat all children equal! May God bless this family and grant them peace. I know how hard it is to bury a child/ Children. It changes your very soul till the day we see our sweet children again.

  27. It is so horribly sad. She deserved to live. But my heart also goes out to the people who must set aside emotion and decide who gets a rare donated organ and who doesn’t. The horrible truth is that if this little girl had gotten a heart, a different child would have died. But neither death can be called murder, any more than you could say that God murdered Annie for giving her a defective heart in the first place.

    Just as an example, if you had to choose between giving a life saving organ to a severely austistic child or to an otherwise healthy child with a potentially bright future, which would you choose? I personally think that including cognitive ability in the criteria is the right thing to do, even as I am a Christian, pro-life, and in favor of helping the disabled.

    My relative got a heart transplant at age 40. He was married and still raising a daughter at the time. That heart gave him the ability to go back to his family and his work and he lived 15 more years and eventually died of cancer, which had disqualified him from another transplant.

    Should that heart instead have gone to a long-sentence-serving violent felon in prison just because he got on the wait list before my relative? (That happened in California. The prisoner died a year or two later due to non-compliance with his meds. The public was so angry, that people started refusing to donate organs unless they could be guaranteed it wouldn’t go to a prisoner. How many more people died due to withheld organs?) Or should it have gone to a brain injured person in a nursing home who will never recover? Cognitive ability and quality of life do matter when allocating a very scarce resource.

    With so few organs, committees HAVE to make medical as well as value judgements about who gets them and who doesn’t. But that line for cutting off candidates based on cognitive ability could move significantly if there were more organs available.

    Until more people are willing to donate organs, a whole lot of deserving people for a whole variety of reasons will continue to die for lack of one. When one grieving parent or spouse refuses donation, 4 people die for lack of organs. It just seems ridiculous to me to put usable organs in the ground to let them rot.

    Perhaps there’d be enough organs to lower the cognitive ability cutoff if we had a central registry for organ donation where a self identified donor couldn’t be overridden by freaked out family members.

    I personally think that advocacy for Down’s Syndrome kids and adults could be more effective by putting this topic of organ donation qualification on the back burner. There are too many other complex issues with organ donation, and that debate distracts from the more common and everyday issues of DS sufferers in our society that are easier to address.

  28. Lori M. I sure do hope you’re lying, because the head of transplant at U of M, per HIPPA guidelines, doesn’t have the authority to comment one word to you regarding this child.

  29. Pastor Rick. Anne was and is absolutely beautiful and my heart and prayers go out to you for your loss.
    I recently Produced a pro life Documentary in which we interviewed families with special needs Children such as Down Syndrome. You can watch it on our website conceivedinrape.com We are currently building a website and collecting more interviews and intend to devote a website to just Down Syndrome. One of the things that inspired it was a revelation from God I received at work a couple years ago. Out of the blue this thought struck me with such force that I covered my face with my hands and kept repeating “Wow, wow, wow.” The realization was this. That God creates these precious Children exactly the way He intended, That they completely fulfill their life purpose and destiny which is this. To draw out and to impart special graces and spiritual gifts to those who treat them with love and dignity and care for them. I believe they have a ticket to heaven. God sends them to help us and to bless us. To test us and to be our judges. God doesnt judge Nations on their economic or military might but on how we respond to “The Least of These” We as a culture are failing the test and missing out on a huge blessing by aborting almost 94% of these incalculably Precious Children. A few days after I had this experience at work I was at Church and in the middle of the service when people are not up and walking around a little boy who I didnt even know at the time came and sat down by me and scooted up against me like I was his best friend in the whole world. The little boy has Down Syndrome. His Name is Jesse. His father Jim has ten kids and says “If I got news I was going to have another child with Down Syndrome I would “Jump for Joy.”
    That day at Church When out of three hundred people “Jesse” came and sat down beside me it was one of those unmistakable “God Moments.” This is one of Jim and Jesse’s interviews.

    If you would consider being interviewed or share more of your story I can be reached at kevin@conceivedinrape.com Again My deepest condolences go out to you and your family.

  30. That little girl is my daughter. My heart is broken forever and I miss her every day.
    Nobody official denied a transplant for her, but…..when we asked her cardiologist in the office we were told that there is so many “health” ( meaning no DS but with heart defect) that she will never get one. This is totally a discrimination. Please remember we are a family that lost daughter, sister. We are trying to survive every day. It’s been very hard. We are not strong yet ( and maybe never will) to pick up the battle on transplants. We love You Annie!
    Monika

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