Showing posts with label Abortion. Show all posts
Showing posts with label Abortion. Show all posts

Tuesday, August 14, 2012

Intubation and Life on a Ventilator is NOT Torture or inhumane

     One of my, distant friends posted a link to this article on Facebook, and this is really her view and unfortunately the view of so many people and most of the medical establishment. I have yet to figure out why intubation/ ventilation is considered an extreme measure. It doesn't seem extreme or all that painful at all to me. My nephew Samuel doesn't seem bothered by it at all from what I can tell. It just seems like it would be a ton of work for mom and dad. The article wants to stereotype parents who fight for their kids against the medical establishment as all misguided religious zealots who are hopelessly wanting a miracle. I realize every case is different but I also see bea
utiful children that are enjoying life with smiles and giggles that wouldn't be here today if they weren't given that chance. My thinking is why not try ventilating. They can die on a ventilator too, but maybe they won't and maybe miracles can still happen. This article irritated me. I do know there has to be a balance and each case is different and only the parents and Drs as a team can determine the best course of action and hopefully work together for the best outcome but I think in the case of Thanatophoric dysplasia it definitely is an uphill battle for parents against the medical establishment. It is so awesome to actually see what these little guys can achieve when given a chance. 


The article I was upset about is here: 
Parents who believe in miracles 'torturing' dying children, doctors warn

      My sister-in-law would be considered one of those religious zealots mentioned in the article who fought the medical establishment to intubate Samuel. He was born a Thanatophoric dwarf which is a condition considered incompatible with life. 
Very few of these kids have been allowed to live because this is the viewpoint of the medical establishment and in many hospitals and their Dr's will refuse to intubate these children and most parents will not put up a fight. My sister-in -aw is now writing a book about her ordeal Called a "Miracle in My Living Room"





Monday, March 5, 2012

Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 6 years old

Samuel is my nephew his mom is my sister-in-law Evelyn. Our husbands are brothers.


Samuel's Mom now has her own blog at:

  http://hopeseed.wordpress.com/



Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 6 years old!

This is Samuel and one of his teachers.

Update Samuel Turned 6 on Aug 2, 2011 and is still doing awesome things. He now is in school, well the teacher comes to him, but still really cool. He uses switches to operate his computer and toys.






Other More Recent Pictures from about 2009 to present (11/2010) not in any order.


This is Samuel and his mom Evelyn (Evelyn is my sister-in-law and Samuel is my nephew)




Isn't he Darling!!




_______________________________________________________________________





8/1/2008 Update on Baby Samuel
He was born a Thanatophoric Dwarf. It is Also called Thanatophoric Dysplasia. It is a condition considered incompatible with life. Only 3 have ever been known to survive into early childhood. Well Samuel is going to make number 4. Samuel Turns 3 years old on Saturday and miracle of miracles he is breathing on his own off the vetillator for short periods of time. Another thing, according to doctors he was never suppose to be able to do. Check out his website where his mom keeps a journal. Feel Free to Sign his guest book and wish him a very happy 3rd Birthday. I know he and his family will appreciate it greatly and please keep them in your prayers.

Yeah to Samuel and his Family.
This is Samuel.
Hope you enjoy it and laugh along!!

Surviving Well on a ventilator, Surviving Thanatophoric Dysplasia, Surviving with Ventilator not painful, Thanatophoric Dwarf, Living With Thanatophic Dysplasia

Thanatophoric images, Thanatophoric pictures, Children living with Thanatophoric Dysplasia, thanatophoric dysplasia type 1 survivors

Saturday, September 18, 2010

Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 5 years old!

Update Samuel Turned 5 on Aug 2, 2010 and is still doing awesome things. He now is in school, well the teacher comes to him, but still really cool. He uses switches to operate his computer and toys.





Other More Recent Pictures from about 2009 to present (11/2010) not in any order.












_______________________________________________________________________





8/1/2008 Update on Baby Samuel
He was born a Thanatophoric Dwarf. It is Also called Thanatophoric Dysplasia. It is a condition considered incompatible with life. Only 3 have ever been known to survive into early childhood. Well Samuel is going to make number 4. Samuel Turns 3 years old on Saturday and miracle of miracles he is breathing on his own off the vetillator for short periods of time. Another thing, according to doctors he was never suppose to be able to do. Check out his website where his mom keeps a journal. Feel Free to Sign his guest book and wish him a very happy 3rd Birthday. I know he and his family will appreciate it greatly and please keep them in your prayers.

Yeah to Samuel and his Family.

Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia


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



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

Saturday, August 1, 2009

Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 4 years old!

Samuel is my nephew his mom is my sister-in-law Evelyn. Our husbands are brothers. This was an old post. Samuel Turned 6 in 2011 and his mom now has her own blog.


Samuel's Mom now has her own blog at:

  http://hopeseed.wordpress.com/




(new update: of 11/10/2009 A few weeks ago Spirit FM 90.5 aired their story. Here is the audio Story/ Interview that aired)


Yeah! Another Birthday- I can't believe it has been another whole year!!

For anybody new-- here is a little information about Samuel :

He was born a Thanatophoric Dwarf. It is Also called Thanatophoric Dysplasia. It is a condition considered incompatible with life. Only very few have ever been known to survive into early childhood. Samuel will turn 4 years old this Sunday and miracle of miracles he is breathing on his own off the ventilator for short periods of time. According to doctors he was never suppose to be able to do that. Check out his website where his mom keeps a journal. Feel Free to Sign his guest book and wish him a very happy 4th Birthday. I know he and his family will appreciate it greatly and please keep them in your prayers.

Yeah to Samuel and his Family.

This is Samuel.
Samuel with his mom


Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia



Boy I'm tuckered out. Just too much excitement!

Hey you-- get down on the floor and play with me.

Saturday, April 25, 2009

Mad at England and Socialized Medicine- Need to Vent



I AM MAD AT ENGLAND!!!
I have to vent--

Short history: There is a little boy named Samuel that was born a Thanatophoric dwarf- He wasn't suppose to survive. He is almost 4 now.

Well I belong to a Thanatophoric support board:

Anyway there is a young women on the board from England whose baby has been given the same diagnosis as Samuel and the medical community won't do anything for her.

They won't let her deliver at a hospital that has an intensive neonatal unit- She has to deliver at her local hospital. They won't let her have a c- section even if the baby is breech that would give the baby a better chance of at least being born alive instead of still born. They won't give the baby any special treatment like a vent after he is born. They won't even give her a doctor for the delivery jut a midwife. No offense to midwives, but this is a high risk pregnancy especially for the baby. She was pressured to abort but said no. They have just decided that this baby isn't worth any special effort at all because his diagnosis is fatal/ futile!!! Which it is not! just look at Samuel. I guess England doesn't consider it cost effective to do anything to help this mother and child. GRRRRRRR I don't like our system in America but this is why Socialized medicine stinks too! Samuel's mom was on bed rest at the hospital the last month or so of her pregnancy so she wouldn't go into pre-mature labor. She had a c- section to give the baby the best chance at being born alive. They gave Sam the same drugs they give pre-mature babies to help their lungs (which is why he probably survived) They went along with Samuel's parents wishes to have him placed on a ventilator - And today he is happy and bubbly, laughs and smiles and interacts with his environment. All things the doctors said he would never do.-
Just see here:
http://deenyssimplejoys.blogspot.com/2009/01/update-sam-surviving-3-12-year-old.html

Samuel also has a you tube video where he is laughing too cute!
http://www.youtube.com/watch?v=R_Q92MC8plU

And a news article all about him here:
http://www.catholicnewsagency.com/new.php?n=14845


The young mother in England is Named Chelsea - This was her last post to the Thanatophoric Support group board:

From Chelsea) ...Did anyone have a breech delivery with their baby? Ive been told Charlie is breech and may not turn so will have to deliver him/her breech. They won't do a c section so I will have to deliver myself. Also been told I won't have a doctor, just a midwife. Hope she is prepared!!
Still feel very let down by the system. No support or counselling. Have been asked if I would like a post mortem done but have said no. It seems like the medical profession want to do these things once Charlie goes, there is no help being offered while Charlie is alive! Doesn't make sense :-(


OK I am so mad at England and Socialized Medicine right now!! Sorry had to vent

Friday, January 16, 2009

Update: Sam a Surviving 3 1/2 year old Thanatophoric Dwarf has Fun at Sea World & Disney



Update: 1/16/09

Hi Everyone,

This is another Update on the wonderful and amazing life of Samuel who was born with Thanatophoric Dysplasia. He is surviving, thriving, full of life and doing fantastic. Here he is in his shades on his trip to Disney & Sea World. The wonderful Make A Wish foundation granted this wish for Samuel and his family. I want to let families know that if they ever have to face the choice of whether to put their child on a ventilator that these children do not live in pain and do have a very wonderful quality of life. I don't always think doctors give parents all the information necessary to make an informed decision. I think doctors in many cases scare people away from life saving procedures especially when they feel there is supposedly no hope. I want to let parents know they do have options. Choose life.


He is a giggly, happy toddler who does interact with his environment.
Samuel and His Mom at Disney & Sea World in Orlando Florida
A Wish Granted to Him By The Make A Wish Foundation

Samuel's Website
Sign his Guest book


A Sampling of Pictures From Samuel's Trip















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