Tuesday, November 10, 2009

Chose Life Story, Samuel living with Thanatophoric Dysplasia


As most of you know my nephew Samuel was born with a condition called Thanatophoric Dysplasia which is a condition that is considered incompatible with life. My Sister-in-law and brother-in-law went against Doctors wishes and did not have a therapeutic abortion. A few weeks ago Spirit FM 90.5 aired their story This is an audio file of that story that aired on Spirit FM.

Here is the audio Story/ Interview that aired

video

Here is a link to some pictures of my nephew Samuel
Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 4 years old!

Samuel's Caring Bridge Website


Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia, Living with thanatophoric dysplasia, surviving thanatophoric dysplasia, living on a ventilator

9 comments:

Anonymous said...

I simply have to ask. How is this choosing life? My son also had TD. My husband and I chose to do the best, unselfish, and humane thing in the world which was let him go. Why put your son through such a horrible life to satisfy your need to parent? Yes, I completely understand what it is like to have to go through what you went through; however, your giving people false hope. These children have no quality of life and never will even if they survive past the 48 hour mark. They will never smell a rose, play in the leaves, or feel the warm sun on their little faces. They will only ever know a machine breathing for them, the pain of several needle sticks and procedures just to sustain a heart beat. And for what? Answer that for me, what?

Deeny said...

Anonymous first off I am not the mother-- I am the Aunt. Second you are so mistaken on everything you just postulated. Samuel has a wonderful quality of life- Did you not look at the pictures? He laughs, he smiles, he plays, he has favorite toys he loves to look at himself in the mirror, he interacts. He even has a teacher who comes and works with him and he can push buttons and operate a computer. He has been to Disney World, and Sea World and to the beach, He has felt the sun and the breeze on his face, tasted the wonderful taste of all kinds of food including candy, and smelled the roses. My sister-in-law and brother-in-law take him for walks (the ventilator is portable) They take him to church regularly. They take him over to family and friends houses. You were told that these children would have a poor and painful quality of life but that is not the case. You were lied to. My sister-in-law chose to have him ventilated so he could survive. if God want's to take him home he can certainly do so on the ventilator. And miracle of miracles he has been off the ventilator for up to 4 hours (but it might have only been 2- I am not sure I don't remember what my SIL told me) So who knows. No-one has allowed these children to live long enough to actually know what their potential is. My sister-in-law was told he would not do almost all the things he is doing. And for what you ask?- For life the simple joy of life and for hope. Maybe his life is meant to give others hope. You sound like you were given no hope for your little one and made decisions accordingly. Samuel is 4 years old now who knows how long he will continue to live and thrive .

Deeny said...

Dear anonymous I truly feel for your loss. I can never know what is is like to make those decisions you and my sister-in-law faced. No one can fault you for the decisions you made out of love, caring, and compassion. I am in no position to tell anyone that their personal decision was right or wrong. It was best for them at the time. My original response was a gut reaction to your comment on my blog. After re-reading my response, I thought maybe the tone might have come across as harsh or judgmental, which was not my intent at all. My quarrel is only with the medical establishment and others that want to say what quality of life is worth living. I want to let others know that life on a ventilator is not a bad or painful way to live. We have come so far from the iron lungs of the past. Please accept my sincere apology if my original response came across as unloving or caring or judgmental in any way. That was not my intent. Sincerely Deana

demetria said...

DEENY

demetria said...

Hello Deeny, i want to first say thank you ; because you have gave me hope, & my family I thank God for women like you who has so much compasion for a child that is not your. the funny thing about it is that I myself is fighting with my sister to help her child stay a live, & i truly beleive in mircles & i know what God can do, he is the creater of life & death he determine when your life is up.i would like to speak to u if possiable, can u email me at. mimi.919@hotmail.com i'm trying to find a doctor for my neice who deals with this. thank you. p.s God is going to bless you for your faith.

shashank said...

Here is a link to more information about the genetics of Thanatophoric Dysplasia that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Thanatophoric_Dysplasia/364. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

cambyre said...

My baby is due in 4 weeks and has been diagnosed with td. I will take any kind of hope I can get. I want everything possible to be done for her but at the same time I pray I have the strength to let her go should it get to that point. I can only imagine that feeling of having to choose to let your child die or not. I wish I never had to but I know that day is coming soon. I couldn't do the termination I had to give her a chance and I plan to do the same once she's here.

Deeny said...

Saying Prayers for you Cambrye :-)

Anonymous said...

My BabyMeana has been diagnosed with TD. She is so very active in my womb. I wish the doctors would have NEVER told me so I coulda enjoyed this pregnancy. Now, everytime she kicks.....smiles are followed with tears. The doctors are so 'matter of fact' like.....WHY CAN'T THEY BE WRONG???!!! No amount of prayer or technology is going to change BabyMeana's diagnosis. My poor baby! Oh please, God, help me. I'm losing my mind.