Saturday, November 20, 2010

“Please, don’t Let me die” - Baby Doe

Last Night, Friday night, I am home after a week of traveling.  On TV is the Boise State vs Fresno football game.  My three boys are sleeping and my wife decides she better turn in as we both know at anytime Shane or Wyatt (or both) will wake up again.  A friend sends me a message as she is traveling with her family and is having a problem at the hotel where they are staying.  I am the worldly traveler after all. I feel good, relaxed and nearly ready for bed myself.  I am having a pretty good evening. 
Then something happened on my way to bed.  I turned on the computer and read a post about twins that were born.  Born at 37 weeks, one baby was apparently healthy and had just gone home with his new parents.  The other, born with Down syndrome has serious medical complications and is fighting for his/her life. This baby is not going home and has no home. This child was left behind, not wanted and with a Do Not Resuscitate (DNR) order. Guess what?  Going to bed would be delayed as I spent the next hour or so trying to find out more about this baby.  I, along with others, began posting this story on line, on web sites of Down Syndrome Associations and The Children’s Hospital.  This poor baby needed help and it was life or death.  The hope was to get this information posted ASAP in hopes of finding a family that may be able to help and advocate for this baby.  Before I finally fell asleep, I received a reply from a family that might be able to help.  By morning, The Down Syndrome Community was responding in force.  The word was getting out and many were talking about this situation and spreading the news in hopes of saving this baby.  I also know other families have expressed an interest in advocating and even adopting this child.  This story will not end today as this process can take time and can’t be resolved with one phone call.  As I write this today, we all need to continue to pray that this child continues to receive the medical treatments necessary for life.  We need to pray that a family may become involved in the medical decisions that will be required and adoption happens quickly.
Personally, I know how devastating it can be to have a child that is sick, in need of medical care and advance treatments that deal with life threatening conditions.  I have two boys that are still going through some of this.  I get it.  I know the shock associated with this and my wife and I cried long and hard after Shane and Wyatt were born.  We needed to process what happened and the impact this would have on our lives.  Our story has been told so I won’t retell it, but this is what I do know.  Life isn’t fair and sometimes life throws you a curve ball when you are expecting a fast ball.  I also know that people deal with issues differently but death for a baby doesn’t have to be a first and only option.  I also know the fight for life that both my boys had in them from even before they were born.  They wanted to live!!  I do realize that babies sometimes die or difficult decisions at times need to be made concerning life or death but to simply allow a baby to die as the first and only option is just very sad to me.  This child, like Shane and Wyatt and so many others deserve a chance at life.  Maybe, just maybe if we asked this baby what should be done the response might be “Please, don’t let me die”.

24 comments:

  1. Eric, what can someone who reads your blog do to help????

    Mary Jane Fitch
    Proud mommy of a Down Syndrome princess
    Email: maryjane@fitchfamilyfunzone.com

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  2. This story saddens me deeply...

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  3. I am there with you, there is no reason in the United States that a baby should be allowed to die. I couldn't fathom the idea of walking away from Elizabeth when she was born. Like you we were there every day that we could be, and my heart ached the days/hours I couldn't be. Just reading about how this little one was left behind because she/he was not perfect in the adoptive parents eyes brings tears to my eyes.Not knowing the whole story I would like to know how they were able to leave one baby behind just because it wasn't perfect according to them. And not be in trouble with the law. Or how they were able to take the one only!

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  4. I know at the moment that there is a family in AR that I believe already has a homestudy done - I hope this little angel is able to get adopted quickly and into a very loving family! He sure deserves it.

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  5. I read this story in the news and just couldn't believe it...I'll admit when we found out Brooke's diagnosis we were shocked and devastated...we've had open heart surgery and all the appts that come with DS, but couldn't imagine life without her...
    I really wonder what this family was thinking...were they scared? And how is it even legal to give the baby a DNR? It absolutely blows my mind...for one of the first times in my life I was speechless...
    I don't know if those people should be ashamed of themselves or if we should all feel badly for them for being scared and confused...
    btw..I came to your blog via another..I'm eager to go back and read your story!
    If you like a peek at my blog come and visit...my Brooke (and my others) are super cute...

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  6. This baby needs an advocate in Arkansas. The adoption agency that has custody is not releasing him at this time. If anyone out there is in Arkansas, please email Robin Steele rsteele@zoomtown.com!!!

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  7. I wish I lived in Arkansas. I would advocate and then adopt in a heart beat. My DS daughter, who is also a twin, almost died so many times. Heart surgeries and other surgeries and this and that and years of tears and prayers.. I would do it again in a heartbeat. How can someone be so cruel. Praying for this poor baby. May he have the strength to get through this rough start and have a family to love him! Shame on the family that left him there... it's their loss and they don't deserve him anyway!!!

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  8. I feel strongly that an unwanted baby should not go home with parents who don't want him. He will die of neglect, failure to thrive and whatever else is fueled by their resentment of his existance. Somewhere, there is a family-right this second, who is frantically making phone calls and sending emails to anyone with the authority to find this little blessing a forever home. I will pray for him!! ~Mindy from Ohio

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  9. Someone at that hospital should have explained the joys of having a child with Down Syndrome. Joey is the light of my life. I pray he is taking to a loving home and has an advocate soon. I wish I could.

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  10. How can parents possibly accept this prognosis? As a mom who received a diagnosis of cancer for my 2 year old son 35 years ago I know that you never give up until all hope is gone, and maybe not even then. My wonderful son will be turning 37 on December 8th, 2010. What if I had ever said, DNR? It's incomprehensible!

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  11. so sad to hear this. prayers for the baby...

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  12. As a mother of twins - one in my arms and one in heaven - I hope and pray that this precious little life finds a home where he will be loved and cared for just as he deserves. If I was not miles away in Australia I would be the first person to put my hand up. Hugs to all of you who have rallied around and prayers for this little baby that he may get the opportunity to have the life he so richly deserves.

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  13. how sad .. i know someone who gave their downs baby up for adoption and fell again straight away to have the perfect baby .. its hard not to judge .. i simply do not get it tho. this baby does deserve a chance at life ... im sure they will find someone to love and care for this baby. the family who left this baby are going to miss out on soo much more love .. their loss.

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  14. Wow. Disgusting. I will be the first to admit that I have thought about what my life would be without my second son. It would be sweet to not have several Dr. appointments a month, therapy & the screaming. It would nice to not have to worry about the safety of him and the other boys, it would be nice not to be several tens of thousands in debt. But our life the one that has changed so much with him, would be so empty. There is a thought that creeps in, but I am only human & sometimes life is hard. But why else do we live? I live to live. I pray this baby gets to live, I pray he has a family who will love him just as I love my son. I understand there beginning feelings, but to leave the child & with a DNR order....that is unthinkable. They have left a child to die, a child wh o could have a wonderful life & they should be charged for murder if the unspeakable were to happen. That's just my opinion. Praying. That is all I all can do.

    Dana @The Sears Fam

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  15. Can't get this baby and his sibling who already found a home out of my mind. Praying for all concerned, especially a loving home for the lonely, little guy. Can't believe someone could walk away from that baby!

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  16. Thanks for staying up that night! You have made a big difference in that baby's life!

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  17. As the adoptive mom of a "baby boy doe" this story saddens me greatly. It's hard to believe that in this country in this age this still happens but it does. The bio parents of my son abandoned him at the hospital due to his diagnosis of DS using the "safe haven" law that allows you to abandon a child shortly after birth with no legal consequences. Little did they know the joy they left behind! Thier loss is my gain! I can't imagine my life without my precious son!

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  18. Just had a read receipt for my email so can confirm emails can be sent to Governor Beebe using Jenny.Boshears@governor.arkansas.gov

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  19. I personally know a family that made a decision like this, but it was made to terminate before the child was born. It was an agonizing decision that the parents still grieve over. While I disagreed and argued vehemently against their decision and was willing to take the child, it was clear they felt it was just beyond their ability to cope with. Since the majority of us choose not to take any of the many children out there needing families we are not in the position to judge them harshly. I have had to say no to two different children because I cannot take care of more than the three I already have taken and it was/is heartbreaking to me but I have had to be realistic about my limitations. If you have the where with all instead of self-righteous indignation against this child's parents go contact the state you do live in and give one of the hundreds of needy children there a home; if you like these parents have to admit you cannot take care of a needy child then humbly pray that those who can will step forward and for the broken hearts of the parents who have not been able to.

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  20. This has nothing to do with the parents (adoptive or biological in this case) and everything to do with a person's right to adequate medical care and a shot at LIFE. When we let the "inferior" die, we embark on a slippery slope that ends in "survival of the fittest". We are PEOPLE, not animals! I pray that this precious life is valued by those in a position to save him!
    Sincerely,
    Nikki
    ADOPTIVE mom to an angel with Down Syndrome (chosen especially for that reason. I didn't know how much I wanted a baby with Down Syndrome until I adopted one!!!!!)

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  21. Are you hearing the full story? Sometimes Down's babies are born with terrible heart defects that are unrepairable (like an incomplete septum between the right and left side of the heart). There would not be a DNR on a child unless there was a good reason. No nurse would stand for a DNR on a baby just because it is Down's. I would like to know what else is going on with this child. The parents may not want to get attached to a baby that is most likely to die. It may not sound like something you would do, but everyone has their own way of dealing with grief. My challenge is to get the full story before you condemn these parents.

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  22. To mes2021, while it is true that we do not know the specifics of this child's medical condition, one has to wonder, in the absence of Down syndrome, would those prospective adoptive parents abandoned that baby at the hospital???? I have a suspicion that the diagnosis of Down syndrome was more of a contributing factor than they would care to admit. Incidentally, my own son was born with both DS &.....as you say, "an incomplete septum between the right & left side of the heart" OR a "complete AV canal defect", as the professionals like to call it. I can assure you that not only was my son's defect repaired at age 3 months, but he is now a very bright, happy active little guy who will turn two on Dec 5th. You might want to do a little more research on congenital heart defects before you start claming which ones may or may not be reparable. You'd be surprised at what cardiothoracic surgeons can accomplish these days.

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