Santorum daughter hospitalized..

[Maul the Koala]

A very small percentage of those born with Trisomy 18 who survive early childhood - nearly always female - can live into their late teens, but the odds are not good for poor little Bella.

I wonder if she has the full 3 chromosomes or if some cells have the 3 chromosomes and some have 2 chromosomes. I think the latter tend to live longer than the former. Regardless it's a very hard existance and less than 1% do make it to adulthood (and they're of the mosaic form and not of the full 3 chromosomes). Poor child. I imagine she's been in and out of hospital for most of her life.

[NurseNell]

It's amazing what being born into a family with stellar medical insurance can do for a girl.

I had a student with trisomy 18 who is still alive at age 7. She has very fragile health. She was born to Hmong immigrants and is on medical assistance. A co-worker's baby with it, and good insurance, lived only a few hours. With trisomy 18 it's a matter of luck as to who lives and who doesn't. The majority do not live beyond a year, a few do.

Wasn't yesterday supposed to be a non twittering day, as some sort of protest? Why was Josh twittering?

edited because I don't know the difference between twitter and tweeter.

[NurseNell]

The unfortunate reality is Ricks daughter was born with a condition that is incompatible with life. I wish her pain free comfort for any time she has on this earth.

Rick and his wife are still asswipes. They have a child with a severe genetic defect who has survived because of the medical care paid for by his ins. During the debates he was quite clear what he thought about others getting this same level of care.

My last 20 years in nursing were spent with special needs and medically fragile kids. My kids represented every rare and orphan disease in the textbook. At least half of my kids were on medical assistance. A great many were born in refugee camps in Thailand and the Sudan, or were born to immigrant and refugee parents. One was the daughter of a man who was among the 100 wealthiest men in the U.S. One was the son of a state supreme court judge. Many had professional parents. The one thing they all shared was excellent medical care whether they had insurance or medical assistance. Even if the families don't qualify for insurance these type of special needs children do. All the refugee families get M.A. by virtue of their refugee status. Once in a great while we had an undocumented child who couldn't get M.A. but they were treated at Shriners and got excellent care. I can truly say there was no difference in treatment whether the parents were millionaires or brand new refugees.

[YPestis]

It was amazing to hear Santorum's child had Trisomy 18 and already lived to the ripe age of 3. I hope she does not suffer too much before passing. I've heard Santorum talking about how angry he was when his daughter's doctors told him to prepare for her death shortly after her birth. What's there to be angry about? The doctors were only going by statistics. It's more cruel to give parents false hope. It's not "celebrating death" or bad to think about plan someone's passing. I think Santorum is so obsessed with "life" that he forgets dying is also a natural progress of life. As my SO says, life is a terminal illness.

[friers57]

It was amazing to hear Santorum's child had Trisomy 18 and already lived to the ripe age of 3. I hope she does not suffer too much before passing. I've heard Santorum talking about how angry he was when his daughter's doctors told him to prepare for her death shortly after her birth. What's there to be angry about? The doctors were only going by statistics. It's more cruel to give parents false hope. It's not "celebrating death" or bad to think about plan someone's passing. I think Santorum is so obsessed with "life" that he forgets dying is also a natural progress of life. As my SO says, life is a terminal illness.

THIS! My cousin and his wife had a baby who was born with trisomy 18 and lived for less than two weeks. The doctors all said that a child born with this condition is rarely born, let alone lives for more than a week. Their poor bodies have too many abnormalities and underformed organs to live. Without the NICU staff (all of whom where amazing, in my family's experience) properly preparing the families of these children (mine included), no one would understand to celebrate every day (hour) that these babies live and to ready themselves for the awfulness that will come. His anger is misplaced and odd considering that the vast majority in the same situation have to prepare for the (truly awful) decisions that have to be made too soon following their baby's birth.

That being said, I hope this little girl is free from pain and surrounded by those who love her.

[HOTW]

I have an online friend whose GDaughter has Trisomy 18 she lived to be 10, She was totally dependednt on oxygen, never was able to eat orally but did not have t eheart issues many have. Her mother who was asian could not handle the fact her daughter was not "perfect" an dleft, leaving my friends and her son to raise her. She was a happy, sweet little girl who is very missed by many. It is very hard to have a child born under a death sentence and while I do not agree with Santorum's views I do give him an dhis wife a lot of credit for having this little girl!

[NeonMoon]

The one thing they all shared was excellent medical care whether they had insurance or medical assistance. Even if the families don't qualify for insurance these type of special needs children do.

Delurking to comment...

I'm having trouble finding info about this, but does the decision about which special needs or disabilities qualify for MA go on a state by state basis? My son has autism, and qualifies for MA here in Pennsylvania regardless of my income. IIRC, PA and Minnesota are perhaps the only two states to offer full coverage to autistic children regardless of parents' income? I know that I will be staying in PA for the forseeable future because I worry about the level of services he would be able to get in other states. Many parents of autistic kids in the gray zone of health insurance coverage make the decision to drastically reduce their earned income in order to qualify for SSI and medicaid.

As Pennsylvania residents, Rick Santorum's daughter probably gets MA as a supplement to the health insurance that they already have.

I hope that she is doing well, and getting all the care she needs.

[Kelya]

My last 20 years in nursing were spent with special needs and medically fragile kids. My kids represented every rare and orphan disease in the textbook. At least half of my kids were on medical assistance. A great many were born in refugee camps in Thailand and the Sudan, or were born to immigrant and refugee parents. One was the daughter of a man who was among the 100 wealthiest men in the U.S. One was the son of a state supreme court judge. Many had professional parents. The one thing they all shared was excellent medical care whether they had insurance or medical assistance. Even if the families don't qualify for insurance these type of special needs children do. All the refugee families get M.A. by virtue of their refugee status. Once in a great while we had an undocumented child who couldn't get M.A. but they were treated at Shriners and got excellent care. I can truly say there was no difference in treatment whether the parents were millionaires or brand new refugees.

Note your past tense. If this asshole gets elected, it will remain in the past tense. His positions on health care and medicaid all indicate that others with health issues would have to suffer in ways he and his family do not. This is the asshole that regrets voting for closing the senior prescription loop because it HELPED TOO MANY PEOPLE. Additionally, while your anecdotal experience is wonderful and i hope accurate for others, there are huge fields of research on health care disparities for people of different demographics, including socioeconomic status. I can't find anything in particular (but I'm searching quickly) on disparities in orphan disease treatment, but a few papers (http://www.ncbi.nlm.nih.gov/books/NBK11567/ is one I'm looking at now), show that a lot of legislation around orphan diseases has made access better than previous, which is good, but does not negate that outside of orphan diseases huge health care/SES disparities exist.

[graciebeth]

People magazine just ran the story. Apparently he has entrusted Boob and Mullet with his duties this weekend...

[Sprocket]

I had a little girl in my class once that had the third rarest 18th chromosome condition. 18q- (18 q deletion). She's eight, but there have been several close calls and she has a very severe form as well. That being said, she is a sweet, beautiful little girl and her mom and I are still close.

I hope the best for Santorum's child and I also wonder how he will do in the primary as he's not there for the last minute flurry of campaigning. Not that he had a snowball's chance in hell anyway....

[Buzzard]

I hope the best for the Santorum family.

I am truly dreading how Smuggar (and the entire Duggar family) will try to take even the slightest advantage out of this, especially after Smuggar's tweets about disabled people.

http://content.usatoday.com/communities ... -family-/1

They're carrying the cross

[clibbyjo]

I feel bad for the daughter and really would not wish that on anyone.

I really do not like Rick for a million reasons and hearing his daughter is in Philly brings me back to his lies once again. As a PA resident and homeschooler,myself, there was some ruckus a few years back an empty modest" house in Penn Hills PA. was their supposed residence when he was milking PA to pay for his kids cyber school but living in a mansion in VA.. The local news proved that the house in Penn Hills was empty and caused a big stink, which is why he lost the re- election http://www.wtae.com/news/9269616/detail.html Now , you think he would have learned his lesson. Penn Hills is still listed as his place of residence ,maybe 20 minutes from Pittsburgh and Pittsburgh's Childrens Hospital. Why he his daughter in Philly(at least 7 hours away from Pittsburgh) if his residence (on wikipedia at least) is still showing Penn Hills? Because he still lives in VA.?

[DistantStar]

I had a friend once whose son had one of the trisomies; I want to say it was 18, but I can't quite remember precisely. He only lived for a couple of hours or so after birth. His name was Daniel.

I can't stand Santorum, but I didn't know about his daughter. That's really a crappy card to be dealt.

[dirtyhippiegirl]

Delurking to comment...

I'm having trouble finding info about this, but does the decision about which special needs or disabilities qualify for MA go on a state by state basis?

Yes, it is state by state. In some cases, county by county or even office by office had specific criteria that you had to meet to qualify for MA. I believe KS didn't standardize their requirements state-wide until two years ago.

For what it's worth I worked full-time and still occasionally work as a pediatric private duty nurse and my experiences, at least with in-home health care options, are contrary to nursenell's experiences. I've worked with families who were paying out of pocket, who were covered under private insurance, and who were covered under Kansas's Technology Assist Waiver/Medicaid and there are some huge disparities in overall long-term treatment of sick children.

[emmiedahl]

I have a relative child who has a rare chromosomal deletion and her mother is very "hooked up" with the global community of parents. The level of care offered by the state varies widely. Because it is so rare, you need excellent medical coverage even to get to the point of a diagnosis. Because it is rare, the parents need to dedicate at least one person to investigating and following through with therapies, calling insurance companies and state agencies to find people who offer the therapies and to procure payment--full time. You might get social security for the child, but it will be a drop in the bucket compared to the child's need for various therapies and medical care, not to mention the wages lost in taking a parent out of the workforce to be a full-time caregiver and healthcare advocate. The child I am close to is a total sweetheart and a blessing in every way, she deserves the best our society and our family can give her. The therapies *are* making a huge difference in her long-term prognosis, so it is not money wasted.

1p36 deletion is not as rare as many other diseases, so I can just imagine what people with rarer disorders deal with.

[DCmilly]

I hope his daughter is not suffering and can be home with her family soon. It is probably judgmental of me, but if I had a child who I knew would probably not live long, I seriously doubt I'd waste any of that precious time roaming the country in a fruitless and expensive campaign.

I wish this child all the best and the most painfree and comfortable life.

With regard to her parents though, I am really surprised that Santorum isn't getting any flack for campaigning with a very sick child. Sarah Palin got so much flack for campaigning with a special needs child and a pregnant teenage daughter. Santorum is leaving his wife alone to deal with 8 children including a very ill young toddler. For someone who has based his entire platform on family values he seems to view the campaign as more important than his overburdened wife and very ill toddler. Its also telling that the base seems to think that its the mother's burden to deal with things like this while the father can be off pursuing his own ambitions.

[gilora]

I wish this child all the best and the most painfree and comfortable life.

With regard to her parents though, I am really surprised that Santorum isn't getting any flack for campaigning with a very sick child. Sarah Palin got so much flack for campaigning with a special needs child and a pregnant teenage daughter. Santorum is leaving his wife alone to deal with 8 children including a very ill young toddler. For someone who has based his entire platform on family values he seems to view the campaign as more important than his overburdened wife and very ill toddler. Its also telling that the base seems to think that its the mother's burden to deal with things like this while the father can be off pursuing his own ambitions.

Word. I was thinking the same thing. Palin's child has Downs, and while there are certainly health consequences, the child was not in life-threatening danger.

I had no idea Trisomy 18 is so terrible. Santorum's campaigning while his daughter has a life-threatening condition is despicable.

[doggie]

People magazine just ran the story. Apparently he has entrusted Boob and Mullet with his duties this weekend...

well that would end his run pretty fast then.

[Gizmola]

There are many valid reasons why Rick Santorum deserves his status as a frothy asshat. BUT, that being said, I do hope that the little girl either recovers or is surrounded with love if she passes away.

Once he uses her death (if that should unfortunately happen) to further his pro-life views, I will then know he's beyond the lowest form of scum ever. I predict it will happen.

[Austin]

I hope she does not suffer.

[Buzzard]

I hope she does not suffer.

And thats my fear. Another Schiavo... poor child.

[Austin]

And thats my fear. Another Schiavo... poor child.

Me, too. Just a political football which was disgraceful.

[Buzzard]

Me, too. Just a political football which was disgraceful.

Precisely. While I hope that she isnt that ill... I see a perfect storm coming. Duggars + Jubilee + Bella = Danger

[lessa]

Well, guess that People article confirms one thing. The Duggars are officially part of the campaign and most likely being paid at least expenses.

[Jezebel]

Once he uses her death (if that should unfortunately happen) to further his pro-life views, I will then know he's beyond the lowest form of scum ever. I predict it will happen.

He's already using her life to push his anti-choice agenda. He and his wife knew she was going to be born with this condition, and that she would live a short life full of suffering. They made the choice to have her anyway. And now he's using her to further his view that no other parents of fetuses with Trisomy-18 should be allowed a choice in whether to carry those pregnancies to term or not. He has all the means at his disposal to care for a severely sick and disabled child--but would offer no assistance to less-fortunate parents of such kids.

When his daughter dies [ETA], I expect a despicable, self-promoting public display at her funeral. But he's already making a despicable, self-promoting public display of that poor child's life. Maybe I'm missing something, but I honestly see no difference. He's a deeply horrible human being, who has allowed his political ambitions to take precedence over his children's lives, and he uses his youngest child's suffering as a political ploy. Of course he'll use her death to further his political goals--I'd be shocked if he didn't.