Trisomy 18 in spotlight after Rick Santorum's daughter Bella hospitalized

In this June 6, 2011 file photo, former Pennsylvania Sen. Rick Santorum holds his daughter Bella before announcing he is entering the Republican presidential race, on the steps of the Somerset County Courthouse in Somerset, Pa. Bella has the genetic disorder Trisomy 18, and was hospitalized over the weekend with pneumonia.

/ AP

(CBS) Bella Santorum, the 3-year-old daughter of Republican presidential candidate Rick Santorum, was hospitalized over the weekend with pneumonia and complications from the genetic disorder, Trisomy 18.

Also known as Edwards syndrome, Trisomy 18 occurs when a person is born with three copies of the 18th chromosome, as opposed to two. That extra chromosome interferes with typical childhood development, causing children to be born with clenched hands, crossed legs, feet with rounded bottoms, a small head and jaw, and intellectual disabilities. The disorder can also cause serious heart and kidney problems. Trisomy 18 occurs in about one out of every 3,000 births. It is three times more common in girls than boys, according to the National Institutes of Health.

Unlike Down syndrome, which is caused by an extra chromosome 21, the issues caused by Trisomy 18 are associated with more life-threatening medical complications and 50 percent of babies with Trisomy 18 who are carried to term are stillborn, according to the Trisomy 18 Foundation.

"When a child is born in this situation, they very rarely make it past the first week, because one or two problems can be overwhelming and it just kind of piles up," Dr. Brian McDonough, clinical professor of family medicine at Temple University who is not involved in Bella's care, told CBS Philly.

McDonough said that even a common cold can be deadly for a child with the disorder. He said that since the Bella is over 3 years old, she's probably undergone a great deal of medical care up until now.

"Going to the hospital certainly is not something that would be unexpected," McDonough said, "but every time a child goes to the hospital with Trisomy-18, you worry a great deal."

CBS News reported that on Sunday Rick Santorum said Bella had a "miraculous turnaround" and remains in the hospital.

The Trisomy 18 Foundation has more on the genetic disorder.

[Medicall]

I don't know what the Senate rules are for continuation for health insurance coverage. Santorum lost his seat in 2006. Perhaps he has been able to COBRA all these years. Senators, like all federal employees, choose one of about 300 private health insurance plans. The taxpayer pays 75% of the cost.
The better "federal" insurance plans start picking up 100% of the medical costs after a deductible is met. Their daughter has a very serious disability with high medical costs. An average parent with average insurance would have to spend all their assets first so they could go on medicaid. Then the taxpayer pays.
It is estimated that the taxpayer in one way or another funds over 60% of all health care. Medicare, medicaid, federal employees, military, veterans, state employees, teachers, firefighters, state medical schools, teaching hospitals, and all contractors who supply goods or services at all government levels. Even when a senator pays her/his 25% of the cost, it is being paid with salary from the taxpayer. Same for a teacher who pays for his/her family's part of the cost.
Does anyone else think it is strange that 45 million Americans do not have health insurance, yet their taxes pay 60% of the health care for everyone else, including workers at the "private" health insurance companies who supply insurance to government workers??????
Disabled Children should ALL have taxpayer health coverage, but so should Healthy Children, and everyone else! BTW, Senator Santorum will be able to retire at age 60/62 and get 80% of his Senate salary of $175,000. Retirees can get health insurance coverage. But Santorum, like most Republican congressmen, opposed allowing Obamacare to give us the same choices that he and all federal workers have. Santorum wants the "Private" Health Insurance Industry to go on making huge
profits, making one CEO (Stephen Hemsley at United Health Care) the highest paid CEO in 2010. Steve thanks us for that 60% subsidy from the taxpayer!!! This is Santorum's "Freedom" chant, his excuse to eliminate Obamacare. I call it Freedom to lose everything you have worked for. We should ALL get the same deal Santorum had, or get Universal Health Coverage paid by the taxpayer. It will only cost us another 40%, but 45 million Americans won't be left out.

[possibletrisomy18mommy]

I am pregnant now and my son may be born with trisomy 18. When there is a problem such as this, doctors push you to get the amnio done. Once you get it done many people then abort their babies. I was told that there is no chance my son will live longer then 48 hours if he has trisomy 18, Iv researched and found many cases where they have lived much longer. I was also told if I got the amnio done and it showed he had it, then the doctors would not try to help him. This is unacceptable to me!! Rick Santorum has been through some of what I am going through and might possibly go through. He simple wants the amnio to not be provided free. I agree. Just because there is something wrong with the fetus, we kill them? We are not god. Its just the same as hitler wanting his perfect world, were pushing for perfect babies and its not right. I love my unborn child and chose not to get the test because when he is born it will be up to god not a doctor if I get to keep my son.

[Nuschlerclark]

What do you mean "then the doctors would not try to help him"? I have delivered babies for over 40 years in my family practice and I have NEVER told ANY parents that I would not help them!
There is no such thing as a "perfect" baby. We do amnios and ultrasounds NOT to decide to do abortions but to detect problems before birth. This helps us get ready to help the new born. For example we can tell if the baby's lungs are mature enough to breathe on his own. If the lungs are not mature by looking at a chemical ratio test, we have the mother go to a hospital where she can get the best care to prevent an early delivery. Then after birth if the baby cannot breathe that hospital has a very good NICU (Neonatal Intensive Care Unit) to help the baby breathe with ventilators, oxygen and highly trained NICU doctors and nurses.
We can even detect heart problems that can be fixed by surgeons BEFORE the baby is delivered! WE have made great strides in detecting problems with the kidney, heart and lung which can be corrected in the womb! I have a mother know whose baby's ultrasound showed an enlarged kidney because of back-up of urine. We were able to go in and place a catheter up through the bladder and below the kidney to get rid of the obstruction. Otherwise the child could have become toxic.
My best friend who is an ICU nurse had a little girl with Trisomy 18...but the baby only lived to 2 months. Every child with Trisomy 18 has different life expectancies depending on how serious the lung and heart problems are.
I have never heard of a sane doctor or nurse telling a mother what you said this doctor told you. Perhaps they were simply trying to prepare you for the problems. If you aren't comfortable with this doctor find another.
I don't understand why Santorum took this child out into public settings like some side show! A simple cold caught from someone at that rally could have sent that child into a fatal pneumonia! This child needs protection from microbes and viruses.

[zinckb1]

Let's hope that you and your wife or husband NEVER have to make this decision.....

[endrepubs]

Santorum's family has excellent health insurance funded by you, the taxpayer. But Santorum is fighting hard to prevent you, the average American, from having the same coverage as he and his family enjoy.

[hsinco-2009]

And by not aborting the fetus, known to have this disorder, has cost us taxpayers lots of money.

[PourpaixPourpaix]

Santorum spawns genetic disorder. Why am I not surprised?

[Medicall]

Re previous comment: Santorum spawns genetic disorder. Pourpaix, I don't like the insinuation that Santorum is genetically defective. Trisomy 18 is a tragedy for all of us. I don't like S's policies either, so I would rather you pointed out how his policies hurt people.

[ljanycchar]

I am sorry for the situation presenting itself with your daughter, but please don't use this as part of your political agenda to get elected. It didn't work for Sarah Palin and it won't work for you.

[gjc1n1]

I think it's terrific that Rick Santorum has the resources (health insurance) to provide excellent care for his daughter. The should be true for all Americans, not just those with the means to pay for excellent health insurance. But then again, Republicans don't support national or any type of subsidized health care. Once again, the 1%ers rule.