Re: Surgery on girl raises ethical questions

[Guest guest]

These parents are totally dedicated to what is best for this girl and totally in love with her. She is blessed to have them and they count her as a blessing as well. Won't our world be a better place if ALL parents treated their kids as blessings instead of inconviences. We need more parents who are dedicated to nuturing their children.

joan

[Guest guest]

In a message dated 1/5/07 9:19:44 PM, ps1272000@... writes:

They did not do it just for their own convience and stated she would  be cared for at home even if she weighed 300 lbs. :-)

We have a dear friend who has severe CP and is over 250 pounds and very immobile. She is in pain all the time because of she is TOO big for anyone to work with. She is very large breasted and has yeast infections under them all the time! We cannot immagine how difficult it is for someone totally dependent on others for care. This family's blog as well helped me to rethink my reaction to their decision to take these measures.

Joan

[Guest guest]

This article makes me grateful to be living "only" with DS...

ette

-------------- Original message from Carol in IL <ps1272000@...>: --------------

AP Photo: In a 2004 photo released by the ashleytreatment.spaces.live.com/blog, a child known only as is...

Surgery on girl raises ethical questions

By LINDSEY TANNER, AP Medical Writer Fri Jan 5, 1:04 AM ET

CHICAGO - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

The case involves a girl identified only as on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

Shortly after birth, had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

An editorial in the medical journal called "the treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

"'s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.

Also, 's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

"Even though caring for involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.

Dr. Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said. "The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time.'" ___ On the Net: 's blog: http://ashleytreatment.spaces.live.com Journal: http://www.archpediatrics.com

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

__________________________________________________

[Guest guest]

saw this in the paper this evening -- so sad and I cannot believe that a doctor

would go along with these crazy parents.

Fort Wayne

=====================

From: Carol in IL <ps1272000@...>

Date: 2007/01/05 Fri PM 04:32:36 CST

DSIE <Down Syndrome Treatment >

Subject: Surgery on girl raises ethical questions

 

  AP Photo: In a 2004 photo released by the

ashleytreatment.spaces.live.com/blog, a child known only as is...

Surgery on girl raises ethical questions

By LINDSEY TANNER, AP Medical Writer Fri Jan 5, 1:04 AM ET

CHICAGO - In a case fraught with ethical questions, the parents of a severely

mentally and physically disabled child have stunted her growth to keep their

little " pillow angel " a manageable and more portable size.

The bedridden 9-year-old girl had her uterus and breast tissue removed at a

Seattle hospital and received large doses of hormones to halt her growth. She is

now 4-foot-5; her parents say she would otherwise probably reach a normal

5-foot-6.

The case has captured attention nationwide and abroad via the Internet, with

some decrying the parents' actions as perverse and akin to eugenics. Some

ethicists question the parents' claim that the drastic treatment will benefit

their daughter and allow them to continue caring for her at home.

University of Pennsylvania ethicist Art Caplan said the case is troubling and

reflects " slippery slope " thinking among parents who believe " the way to deal

with my kid with permanent behavioral problems is to put them into permanent

childhood. "

Right or wrong, the couple's decision highlights a dilemma thousands of parents

face in struggling to care for severely disabled children as they grow up.

" This particular treatment, even if it's OK in this situation, and I think it

probably is, is not a widespread solution and ignores the large social issues

about caring for people with disabilities,<wbr> " Dr. Frader, a medical

ethicist at Chicago's Children's Memorial Hospital, said Thursday. " As a

society, we do a pretty rotten job of helping caregivers provide what's

necessary for these patients. "

The case involves a girl identified only as on a blog her parents created

after her doctors wrote about her treatment in October's Archives of Pediatrics

& Adolescent Medicine. The journal did not disclose the parents' names or where

they live; the couple do not identify themselves on their blog, either.

Shortly after birth, had feeding problems and showed severe developmental

delays. Her doctors diagnosed static encephalopathy, which means severe brain

damage. They do not know what caused it.

Her condition has left her in an infant state, unable to sit up, roll over, hold

a toy or walk or talk. Her parents say she will never get better. She is alert,

startles easily, and smiles, but does not maintain eye contact, according to her

parents, who call the brown-haired little girl their " pillow angel. "

She goes to school for disabled children, but her parents care for her at home

and say they have been unable to find suitable outside help.

An editorial in the medical journal called " the treatment " ill-advised

and questioned whether it will even work. But her parents say it has succeeded

so far.

She had surgery in July 2004 and recently completed the hormone treatment. She

weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter

than she would be as an adult, according to her parents' blog.

" 's smaller and lighter size makes it more possible to include her in the

typical family life and activities that provide her with needed comfort,

closeness, security and love: meal time, car trips, touch, snuggles, etc., " her

parents wrote.

Also, 's parents say keeping her small will reduce the risk of bedsores

and other conditions that can afflict bedridden patients. In addition, they say

preventing her from going through puberty means she won't experience the

discomfort of periods or grow breasts that might develop breast cancer, which

runs in the family.

" Even though caring for involves hard and continual work, she is a

blessing and not a burden, " her parents say. Still, they write, " Unless you are

living the experience ... you have no clue what it is like to be the bedridden

child or their caregivers. "

Caplan questioned how preventing normal growth could benefit the patient.

Treatment that is not for a patient's direct benefit " only seems wrong to me, "

the ethicist said.

Dr. Diekema, an ethicist at Children's Hospital and Regional Medical

Center in Seattle, where was treated, said he met with the parents and

became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would

actually benefit and not suffer any harm from the treatment. She did not, and is

doing well, he said.

" The more her parents can be touching her and caring for her ... and involving

her in family activities, the better for her, " he said. " The parents' argument

was, `If she's smaller and lighter, we will be able to do that for a longer

period of time.' "

___

On the Net:

's blog: http://ashleytreatment.spaces.live.com

Journal: http://www.archpediatrics.com

 

 

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma,

subglottal stenosis, and DS.

My problem is not how I look. It's how you see me.

 

 

Join our Down Syndrome information group -

Down Syndrome Treatment/

 

Listen to oldest dd's music http://www.myspace.com/vennamusic

__________________________________________________

[Guest guest]

I have a 3 year old in the same condition as and I would never mutilate her body to make my life easier. They say it is to prevent future problems, like being raped in a group home or menstrual cramps. How many of us parents of kids with Ds (mine is 15 months old) would stunt their growth so their body would match their brain? Remember when sterilization was forced upon the feeble-minded? The lack of social supports is the problem, not the normal growth pattern.

, mom to 5 under 12,including 2 with special needs

[Guest guest]

Yeah, Dealing with Ds wasn't much of a big deal to me when she passed her older sister developmentally by 6 months old. The heart surgery at 2 months old was a major stressor, but once she got fixed and back to the breast, she's been a the sweetest little joy. Her older sister had hip dysplasia surgery 2 months after the heart surgery, so we had a pretty hectic 6 months with 3 hospital stays. ,homeschooling mom to 3 typical kids (6, 9 & 11 years)and Beth (3-1/2) with severe brain damage due to neonatal sepsis, cortical vision impairment, seizures, dysphagia, g-tube, post-unilateral femoral osteotomy, premature pubarche. Her IEP goals include " hold up her head " and " activate a switch "

and Teri (15 months) with corrected AV Canal and an obstructed tear duct.On 1/5/07, pbeurrier@... <

pbeurrier@...> wrote:

This article makes me grateful to be living " only " with DS...

ette

[Guest guest]

actually I see it the exact opposite - it is easier to move her and take her in

the car because she is small so they give her hormones to keep her from growing?

is often non-compliant and gets harder as he grows - should I stop him

now at 45 lbs to make it so I can still pick him up forever?

=====================

From: JoanElder@...

Date: 2007/01/05 Fri PM 05:03:28 CST

Down Syndrome Treatment

Subject: Re: Surgery on girl raises ethical questions

These parents are totally dedicated to what is best for this girl and totally in

love with her.  She is blessed to have them and they count her as  a blessing

as well. Won't our world be a better place if ALL parents treated their kids as

blessings  instead of inconviences.  We need more parents who are dedicated to

nuturing their children.

joan

[Guest guest]

My first reaction to to this was disgust too. But then I went and read the blog by her parents.

They obviously have thought this through and this same treatment ( with out the hysterectomy or breast removal) was used on healthy girls to halt growth so they wouldn't be too tall. According to the data, there were no long term side effects from it. Ashely had also started puberty herself.

The blog was very interesting and it does answer quite a few questions and the why's- and she does have medical reasons, such as reducing bed sores, which can be fatal ( that is what killed Reeves), reduce pnuemonia and bladder infections- all things caused by body weight and lying down all the time.

I can also attest that breasts on adult women who are bed ridden and also mentally impaired are really annoying TO the woman. They simply get in the way and can get very sore. So I see her point on some of these things. They did not do it just for their own convience and stated she would be cared for at home even if she weighed 300 lbs. :-)

Think of what just had to deal with this week with her hormones. Now imagine that with a woman who can't even act out to let anyone know how miserable she is.

I still don't know- but I am not in her place either. She sure loves her dd. There is no doubt about that and one would assume has her best interest at heart. I so see more of their point though.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

Re: [DownSyndromeInfoEx change] Surgery on girl raises ethical questionsThese parents are totally dedicated to what is best for this girl and totally in love with her. She is blessed to have them and they count her as a blessing as well. Won't our world be a better place if ALL parents treated their kids as blessings instead of

inconviences. We need more parents who are dedicated to nuturing their children.joan __________________________________________________

[Guest guest]

Thier blog is very tempting, but preventative surgery is unethical. It is like the women who have their breasts removed because their mother and aunt have cancer, except that it is herself. Why not give all babies an appendectomy at birth to save another trip to the hospital later? I could see correlating this with the vaccine issue too. 's CP is hypertonic, so she burns calories by having tight muscles all the time. This type of CP results in a smaller adult anyway. Perhaps she inherit breast size genes from her father's side. And what's with the painful periods? Me and my daughter have never had a period that hurt. If they did hurt , she could take something as strong as codeine for them because she won't be driving. I understand the importance of preventing pain because my daughter's world is inside her body. She can't distract herself because of her limited sensory perception. Just last Thanksgiving, she was in so much discomfort that we took her to the ER. It turned out to be a yeast infection from a recent UTI round of antibiotics. I thought she had a hugely painful kidney infection, but we have no way of knowing what's wrong when she's blind, non-verbal, and tetraplegic. I am very worried about what will happen in 20 years. Look at all the progress we've made since the 80's. It could be that when my daughter is 23 we can use unbilical stem cells to grow a new brain for her. Or it could be that I will have to justify to the insurance company why I want to keep feeding someone that will never recover. Respecting a human's right to dignity is what concerns me. This family is acting out of fear too.

,mom to 5 under 12On 1/5/07, JoanElder@... <JoanElder@...

> wrote:

In a message dated 1/5/07 9:19:44 PM, ps1272000@... writes:

They did not do it just for their own convience and stated she would be cared for at home even if she weighed 300 lbs. :-)

We have a dear friend who has severe CP and is over 250 pounds and very immobile. She is in pain all the time because of she is TOO big for anyone to work with. She is very large breasted and has yeast infections under them all the time! We cannot immagine how difficult it is for someone totally dependent on others for care. This family's blog as well helped me to rethink my reaction to their decision to take these measures.

Joan

_

[Guest guest]

Once in awhile I hop into this list and I'm hopping in now. I have found as I age that it's best to look carefully at what the media is giving me, especially when it comes to disabled individuals. I don't trust their agenda.

And now we have parents having to face some truly hard decisions. While there are so many decisions we personally have to make and will make for our child, and it will always our opinion to do the very best we can for her.

There are those who think it unethical to have corrective heart surgery because God made their child this way and they should live with what is dealt them. Or those who do not supplement with vitamins, minerals, etc. because of the same reason. They say, "I love my child, why should I do ___?"

Whether we agree with them or not, we really **never** know what we will do or have to do for our child until we are in that place where a decision has to be made for their best welfare. For these parents to give their daughter the very best care that they can, they chose this route. I can guarantee you that the government would not take care of her as well as these parents...and goodness knows if they're even getting the needed help from the government. But that's another story....

So while our children are young (under 10), I suggest watching and listening to what parents with older disabled children are doing. And be careful what is said, as you may find yourself in that similar situation facing those hard questions.

Tina

[Guest guest]

Great post Tina!

Kathy

Re: Surgery on girl raises ethical questions

Once in awhile I hop into this list and I'm hopping in now. I have found as I age that it's best to look carefully at what the media is giving me, especially when it comes to disabled individuals. I don't trust their agenda.

And now we have parents having to face some truly hard decisions. While there are so many decisions we personally have to make and will make for our child, and it will always our opinion to do the very best we can for her.

There are those who think it unethical to have corrective heart surgery because God made their child this way and they should live with what is dealt them. Or those who do not supplement with vitamins, minerals, etc. because of the same reason. They say, "I love my child, why should I do ___?"

Whether we agree with them or not, we really **never** know what we will do or have to do for our child until we are in that place where a decision has to be made for their best welfare. For these parents to give their daughter the very best care that they can, they chose this route. I can guarantee you that the government would not take care of her as well as these parents...and goodness knows if they're even getting the needed help from the government. But that's another story....

So while our children are young (under 10), I suggest watching and listening to what parents with older disabled children are doing. And be careful what is said, as you may find yourself in that similar situation facing those hard questions.

Tina

[Guest guest]

Very well stated, Tina! I think we all need to not be so judgmental until "we have walked in their shoes" then and only then will we be able to say what we would do for our child.

I pray none of us will have to make similar choices for our own children......

Caroline

[Guest guest]

"And what's with the painful periods? Me and my daughter have never had a period that hurt."

Nor have I, but I know many who have.....have you been reading the posts that Sherry has written about lately. Please let us think before we type. I am also a mother of 5 under 12 with another on the way in 6 weeks. I still think we can and must have some compassion for others. I must say when I first saw this story I was shocked, but I cannot say what I would do in a similar situation.....Medical science has advanced in many ways in our lifetime, but we cannot make assumptions about what the future brings and this family clearly has much love and compassion for their child.

Let's let God be the final judge!

Caroline

[Guest guest]

I've been waiting uncomfortably for this issue to hit the DS lists.....these folks are being slammed unmercifully on some autism lists. I agree with Carol first of all that it's really important to read the whole story first but even then.......It's just plain out as controversial as it gets. My first opinion also was "No way" but after this week with we find ourselves discussing alot of things I never thought we'd ever discuss. Particularly after our CBA told us if had been in a home during this time she would have been put in restraints to prevent physical harm to herself. This would have prevented her from engaging in the only activities that comfort her when she's in pain...her tape player and her videos. She cannot stand to have anyone else control them. It's "her" job.

I totally understand where is coming from and I hope I'm around in 15 years to see how things go with her 3 year old. This really does have scary implications. And I for one need to think about it alot more.

Sherry

[Guest guest]

Elsey is only 7, so I don't know what it will be like when she is

older. I too have fears of what the future may bring for her.

I know of a family in our area who has a daughter in her mid 20's. She

is developmentally that of a toddler (not DS) They had her at home for

most of her life but moved her into a " good " group home as a young

adult. She was raped! They moved her back home but it was too much.

She moved back into another " good " group home. She was raped again! I

can not imagine the pain of those parents. They have their daughter

back home again but there is a limit to what parents can physically do,

too. Plus, of course, we are all aging and will have limits from that.

I pray that our children will be safe from evil.

Jo

[Guest guest]

Correcting a defect is different from altering normality. They have taken away 's normalcy. I also don't believe in docking puppies tails, declawing cats, piercing babies' ears, or circumcising healthy genitals. Of course, removing healthy breast buds and a healthy uterus would offend my sensibilities too. I would have no problem with breast reduction later on if necessary. I would have no problem with a hysterectomy if later on she developed cancer, endometriosis or prementrual psychosis. All of these things are to treat a condition. I cannot think of one surgery that would be acceptable to *prevent a possible* situation. My 3 year old has had surgery for peritoneal kidney dialysis, g-tube insertion, femoral osteotomy, and an eyelid tuck because her eyelashes constantly rubbed her eyeball. The last was even with a plastic surgeon. We only did one eye. We could have done both because the problem may develop on the other eye some day, but we didn't. Her hip surgery was to correct a dislocated hip because she never crawled or walked. This surgery was to prevent her being unable to tolerate the sitting position as a teenager. You would think I would be opposed to this preventative surgery, but I *am* being consistent. She had a current problem to correct...the dislocated hip. 's only existing problem was normal growth and her parent's justified fear of the future. I have no doubt that they love her and this treatment was a hard decision. I could do it to my daughter if I chose, so I've studied this case thoroughly. I could also remove her feeding tube, so she could stop being a burden to our family. I choose not to do that either.

On 1/6/07, Roquemores <dtroquemore@...> wrote:

Once in awhile I hop into this list and I'm hopping in now. I have found as I age that it's best to look carefully at what the media is giving me, especially when it comes to disabled individuals. I don't trust their agenda.

And now we have parents having to face some truly hard decisions. While there are so many decisions we personally have to make and will make for our child, and it will always our opinion to do the very best we can for her.

There are those who think it unethical to have corrective heart surgery because God made their child this way and they should live with what is dealt them. Or those who do not supplement with vitamins, minerals, etc. because of the same reason. They say, " I love my child, why should I do ___? "

Whether we agree with them or not, we really **never** know what we will do or have to do for our child until we are in that place where a decision has to be made for their best welfare. For these parents to give their daughter the very best care that they can, they chose this route. I can guarantee you that the government would not take care of her as well as these parents...and goodness knows if they're even getting the needed help from the government. But that's another story....

So while our children are young (under 10), I suggest watching and listening to what parents with older disabled children are doing. And be careful what is said, as you may find yourself in that similar situation facing those hard questions.

Tina

[Guest guest]

Once again...

>And be careful what is said, as you may find yourself in that similar situation >facing those hard questions.

Tina

[Guest guest]

Once again... I AM in the exact situation.On 1/6/07, Roquemores <dtroquemore@...> wrote:

Once again...

>And be careful what is said, as you may find yourself in that similar situation >facing those hard questions.

Tina

[Guest guest]

What a great discusion we are having :-)

I love hearing all sides.

I can understand how the parents are not viewing this as 'preventative' surgery though. All the problems brought about with weight and growth are KNOWN factors. I can also see their point that it's more dignified for their daughter to keep her nine year old body too. Don't know if I agree..... just can see what they mean.

But since they know for a fact that size is going to *be* a problem as opposed to *might* be a problem, the surgery is not guess work. Its really the same thing as knowng that not correcting a heart is going to cause future problems and correcting it. In this case it sounds awful because you messing with normal growth. Problem is normal growth is not needed or even good for how her brain is able to control her body. Normal for her brain is the body and functions of a baby. So in many ways this correcting that issue to make her life better. If they get her brain to function with her adult size body, I am sure they would have done that. It's very confusing and I am thinking aloud.

I don't think it's fair to say they are acting out of fear with out knowing the parents. How can you be certain they are acting from fear? Saying that reminds of people who ascribe feelings to me regarding and are way off base. They sound as though they are trying to be proactive and help their daughter live a happy, healthy life.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

Re: Surgery on girl raises ethical questions

Correcting a defect is different from altering normality. They have taken away 's normalcy. I also don't believe in docking puppies tails, declawing cats, piercing babies' ears, or circumcising healthy genitals. Of course, removing healthy breast buds and a healthy uterus would offend my sensibilities too. I would have no problem with breast reduction later on if necessary. I would have no problem with a hysterectomy if later on she developed cancer, endometriosis or prementrual psychosis. All of these things are to treat a condition. I cannot think of one surgery that would be acceptable to *prevent a possible* situation. My 3 year old has had surgery for peritoneal kidney dialysis, g-tube insertion, femoral osteotomy, and an eyelid tuck because her eyelashes constantly rubbed her eyeball. The last was even with a plastic surgeon. We only did one eye. We could have done both because the problem may develop on the other eye some day, but we didn't.

Her hip surgery was to correct a dislocated hip because she never crawled or walked. This surgery was to prevent her being unable to tolerate the sitting position as a teenager. You would think I would be opposed to this preventative surgery, but I *am* being consistent. She had a current problem to correct...the dislocated hip. 's only existing problem was normal growth and her parent's justified fear of the future. I have no doubt that they love her and this treatment was a hard decision. I could do it to my daughter if I chose, so I've studied this case thoroughly. I could also remove her feeding tube, so she could stop being a burden to our family. I choose not to do that either.

On 1/6/07, Roquemores <dtroquemore@ gmail.com> wrote:

Once in awhile I hop into this list and I'm hopping in now. I have found as I age that it's best to look carefully at what the media is giving me, especially when it comes to disabled individuals. I don't trust their agenda.

And now we have parents having to face some truly hard decisions. While there are so many decisions we personally have to make and will make for our child, and it will always our opinion to do the very best we can for her.

There are those who think it unethical to have corrective heart surgery because God made their child this way and they should live with what is dealt them. Or those who do not supplement with vitamins, minerals, etc. because of the same reason. They say, "I love my child, why should I do ___?"

Whether we agree with them or not, we really **never** know what we will do or have to do for our child until we are in that place where a decision has to be made for their best welfare. For these parents to give their daughter the very best care that they can, they chose this route. I can guarantee you that the government would not take care of her as well as these parents...and goodness knows if they're even getting the needed help from the government. But that's another story....

So while our children are young (under 10), I suggest watching and listening to what parents with older disabled children are doing. And be careful what is said, as you may find yourself in that similar situation facing those hard questions.

Tina

__________________________________________________

[Guest guest]

Yanno, I have followed this a while too. At first glance I thought oh no, these parents went too far. But then I am "only" dealing with DS. But then I look at my goddaughter, who is 10, and much more severely handicapped. And I can begin to comprehend the future, and its implications for her parents and siblings. I don't know. I know I have an issue with invasive major surgery to keep her tiny.

But then I thought.....

what about shots every so often.....

at what age do you start them.... 3, 5, 10... when would be the acceptable size/age..... I mean a three year old is easy...... 6 year old harder, larger..... 10 moreso... and so on....

Its a whole can of worms, that I am sure will come soon. Then there are the Singers out there who will really shake that tree. And his added agruement will then be one of..... You wanted this God given gift, but now you want it on your terms too.... I can just hear that one coming.

Scary times.

Hugs,

Jules

Put on your big girl panties....

and deal with it.

[Guest guest]

Scary is right..... that's why I can't whole heartedly say I agree at this point.

One point- had precocious puberty, she had already started to develop at 9, which how they found the breast buds. I think her body had already made that choice for them.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

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Re: Surgery on girl raises ethical questions

Yanno, I have followed this a while too. At first glance I thought oh no, these parents went too far. But then I am "only" dealing with DS. But then I look at my goddaughter, who is 10, and much more severely handicapped. And I can begin to comprehend the future, and its implications for her parents and siblings. I don't know. I know I have an issue with invasive major surgery to keep her tiny.

But then I thought.....

what about shots every so often.....

at what age do you start them.... 3, 5, 10... when would be the acceptable size/age.... . I mean a three year old is easy...... 6 year old harder, larger..... 10 moreso... and so on....

Its a whole can of worms, that I am sure will come soon. Then there are the Singers out there who will really shake that tree. And his added agruement will then be one of..... You wanted this God given gift, but now you want it on your terms too.... I can just hear that one coming.

Scary times.

Hugs,

Jules

Put on your big girl panties....

and deal with it.

[Guest guest]

In a message dated 1/6/07 2:19:08 PM, richbmom@... writes:

I've heard many things over the years - should we have our girls sterilized??I've heard many things over the years - should we have our girls sterilized??<wbr>?? 

Bonnie from Ohio

Recently in the news their was a couple who married who both have DS, Sujeet and . (Big news item about 5 months ago). I recall reading that cried when her mom told her that if she had a child it would have DS. So decided to have a tubal ligation, so she would never have any children.

Now this mom was doing her best to inform her daughter, but I have heard of people with DS having children that do not have DS. The man in India who fathered a child with a normal mother and the child did not have DS.

Each decision we make is personal and most likely gut wrentching. I know just the decision to have tubes put in our Olivia's ears was very difficult for me. I cannot imagine having to make so many medical decisions for someone totally dependent. There go I accept by the Grace of God.

Joan

[Guest guest]

On 1/6/07, Carol in IL <ps1272000@...> wrote:

One point- had precocious puberty, she had already started to develop at 9, which how they found the breast buds. I think her body had already made that choice for them.

This might just be a brain malfunction without precocious puberty. My 3 year old has had 100's of dark, curly pubic hairs for over a year, but all testing says no precocious puberty.

[Guest guest]

i am not sure how I sit on this issue, because there is another woman on another board who is dealing with her daughter who has DS that just entered puberty. The poor girl who was very mild mannered has starting going into terrible rages, started to self mutilate herself, tries to twist off her breasts making them bloody and red. She has gotten violent, hitting kicking and biting her own mother trying to help. This mom has tried everything from BC pills, hormone injections, alternative and natural treatments etc. Now the doctors are telling her that it is a behavioral issue and they wont do anything.

What would you do?

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

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Re: Surgery on girl raises ethical questions

Yanno, I have followed this a while too. At first glance I thought oh no, these parents went too far. But then I am "only" dealing with DS. But then I look at my goddaughter, who is 10, and much more severely handicapped. And I can begin to comprehend the future, and its implications for her parents and siblings. I don't know. I know I have an issue with invasive major surgery to keep her tiny.

But then I thought.....

what about shots every so often.....

at what age do you start them.... 3, 5, 10... when would be the acceptable size/age.... . I mean a three year old is easy...... 6 year old harder, larger..... 10 moreso... and so on....

Its a whole can of worms, that I am sure will come soon. Then there are the Singers out there who will really shake that tree. And his added agruement will then be one of..... You wanted this God given gift, but now you want it on your terms too.... I can just hear that one coming.

Scary times.

Hugs,

Jules

Put on your big girl panties....

and deal with it.

[Guest guest]

Here's my 50 cents, I certainly can see both sides of this issue. I have seen others with this situation and have thought of the difficulties the parents could have when the child is an adult and the parents bodies may not in a condition to care for the child as they age. I know of one Mom and Dad in our school that have quads, one with CP - in a wheelchair and must be in a reclining position -hydroencephali with two shunts - siezure disorder, one with CP in a wheelchair, one with complete blindness - possibly mild autism, and one that is typically developing with a visual imparement. I watch this mom at 35 years old with very small children, as they are very small for 6yr olds. She spents 20 minutes getting them into the car and then out of the car, carries two of them to and from wheelchairs and must physically lift them into her van and into their carseats. . . I know this is an extreme example, but I am now 47 1/2, with a

back that goes out monthly, serious neck problems and a right shoulder that will need surgery that I will put off as long as I can. At 35 years old, I had none of these problems but I do now, and they are causing a very big problem for me with a 60lb 6 year old that sometimes cannot or will not comply with what needs to be done for her. She has most likely irritated many of my problems but that is exactly my point. I can say that my parents that have always been quite fit and young for their age can no longer pick up. It is likely that the decisions these parents made for their daughter were probably very hard decisions for them but were made with love and forethought. This may delay this families necessity to someday seek another source of care for their daughter. Many cannot continue to care for severely disabled child as they age and have to resort to a nursing home. It sounds to me that this little girl will

never know or understand the changes that have been made to her body but will be in loving care with her parents for likely most of her life. I was told off severely at a large and crowded event because I carried a locating devise because used to dash off so quickly and get lost. She told me she was going to call security and have me arrested for child abuse!! She was sooooooo angry that anyone would try to locate their child in this way and I actually put the locator around her wrist against her will. She was 4yrs old at the time. I put diapers on her too and I did that against her will many times!! LOL She had nooooo idea what I was dealing with but was sure to place judgement over my choices to keed my child safe. It was a great moment. I get the ethics on this and see the controversy but cannot judge these people. We don't know their situation,

their health concerns, problems, etc. It is between them and God - they love this girl so she is blessed.I've heard many things over the years - should we have our girls sterilized???? Hmmm some say yes, some say no. This is another one and there will be more. . . . Bonnie from Ohio Richbmom@... SAHM to 23 now living on her own, 10 and 6 Ds, CHD, Bronchial Tube defects, gastroesophageal reflux with silent aspiration, slight Nystagmus, Alopecia Areata, and AAI, excellent gross motor skills. . . bet you can't catch her!! http://www.babiesonline.com/babies/a/amr/