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Famly Hope for a Miracle to Save Infant Son
http://www.nwitimes.com/news/local/lake/dyer/article_7a7a152f-3230-512c-8e6b-881082fc1221.html
Dec 8, 2010
DYER | At less than 6 months old, already time is not on Seth Petreikis' side.
After his open heart surgery at 2 1/2 weeks old went so well, doctors were talking about letting the boy, born in July, go home just three days after the procedure. However, his parents soon were devastated to learn he was diagnosed with Complete DiGeorge syndrome, a rare and fatal condition that means his body can't fight infections or viruses.
The only way to fix the problem is through a procedure done by only one doctor at only one hospital in the country.
Seth's parents, Becky and Tim Petreikis, of Dyer, quickly learned the procedure isn't covered by their son's Medicaid, and their two appeals to the state's Family and Social Services Administration have been denied. Petreikis will need the shunt in his heart replaced by February, but he can't have the surgery done unless the Complete DiGeorge syndrome is addressed first.
"It's like he's been sentenced to death," Becky Petreikis said.
Marcus Barlow, a spokesman for the state's FSSA, said the procedure, called a thymus transplant, is considered experimental and therefore not covered by the state's Medicaid.
"These cases are rare and the reason why state regulations exist," he said. "We don't want them reviewed on a case-by-case basis. ... There's quite a bit of due process based on very specific rules."
While his family attempts to figure out its next step, including the possibility of filing a petition for judicial review, Seth spends his time in a world of isolation, according to his mother, who said her home now looks like a hospital. He has seven cousins whom he's never met. Aside from his parents and his 3-year-old sister, Julia, anyone who comes into contact with Seth must wear gloves and a mask.
Seth's mother said only about five to 12 children are born each year with Complete DiGeorge syndrome, and Seth is the first in Indiana.
Dr. M. Louise Markert, of Duke Hospital in North Carolina, is the only physician who does thymus transplants. According to her physician bio on dukehealth.org, 60 infants with Complete DiGeorge anomaly have been transplanted and 43 have survived, a 73 percent success rate. The hospital has told the family the procedure could run between $350,000 and $500,000.
Becky Petreikis said about half the children who have been treated by Markert have had the procedure paid for by their state's Medicaid. Others, international patients, had the transplant paid for by their country.
"Different states have different judgments," Barlow said. "Some states are stricter (than Indiana), other states are less strict."
The Petreikis family is hoping Gov. Mitch Daniels will step in on the family's behalf.
Jane Jankowski, Daniels' spokeswoman, said Tuesday the office was just receiving information about the situation and will review it.
If Seth receives the procedure, he could develop a normal immune system by the time he is 3 years old, and doctors believe while he will have shunts in his heart his whole life, his heart condition is fixable, his mother said.
"We're not fighting for a life in a hospital, we're fighting for a normal life," she said.
On Tuesday, the Petreikis family established a bank account, should anyone want to help Seth afford the surgery. But the family, which has never been able to afford regular health insurance from their family's flooring business, understands money is tight for most people.
"It would mean the world to us if parents would realize every moment you have with your child is precious," Tim Petreikis said. "Grab your child and look to the heavens in thanks. Every child, do our family a favor and honor, show gratitude and love to (your) parents."
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I just came across this article. This story is just so sad to me. What does everyone think about a surgery that is considered a life or death situation not covered by insurance?
Dec 8, 2010
DYER | At less than 6 months old, already time is not on Seth Petreikis' side.
After his open heart surgery at 2 1/2 weeks old went so well, doctors were talking about letting the boy, born in July, go home just three days after the procedure. However, his parents soon were devastated to learn he was diagnosed with Complete DiGeorge syndrome, a rare and fatal condition that means his body can't fight infections or viruses.
The only way to fix the problem is through a procedure done by only one doctor at only one hospital in the country.
Seth's parents, Becky and Tim Petreikis, of Dyer, quickly learned the procedure isn't covered by their son's Medicaid, and their two appeals to the state's Family and Social Services Administration have been denied. Petreikis will need the shunt in his heart replaced by February, but he can't have the surgery done unless the Complete DiGeorge syndrome is addressed first.
"It's like he's been sentenced to death," Becky Petreikis said.
Marcus Barlow, a spokesman for the state's FSSA, said the procedure, called a thymus transplant, is considered experimental and therefore not covered by the state's Medicaid.
"These cases are rare and the reason why state regulations exist," he said. "We don't want them reviewed on a case-by-case basis. ... There's quite a bit of due process based on very specific rules."
While his family attempts to figure out its next step, including the possibility of filing a petition for judicial review, Seth spends his time in a world of isolation, according to his mother, who said her home now looks like a hospital. He has seven cousins whom he's never met. Aside from his parents and his 3-year-old sister, Julia, anyone who comes into contact with Seth must wear gloves and a mask.
Seth's mother said only about five to 12 children are born each year with Complete DiGeorge syndrome, and Seth is the first in Indiana.
Dr. M. Louise Markert, of Duke Hospital in North Carolina, is the only physician who does thymus transplants. According to her physician bio on dukehealth.org, 60 infants with Complete DiGeorge anomaly have been transplanted and 43 have survived, a 73 percent success rate. The hospital has told the family the procedure could run between $350,000 and $500,000.
Becky Petreikis said about half the children who have been treated by Markert have had the procedure paid for by their state's Medicaid. Others, international patients, had the transplant paid for by their country.
"Different states have different judgments," Barlow said. "Some states are stricter (than Indiana), other states are less strict."
The Petreikis family is hoping Gov. Mitch Daniels will step in on the family's behalf.
Jane Jankowski, Daniels' spokeswoman, said Tuesday the office was just receiving information about the situation and will review it.
If Seth receives the procedure, he could develop a normal immune system by the time he is 3 years old, and doctors believe while he will have shunts in his heart his whole life, his heart condition is fixable, his mother said.
"We're not fighting for a life in a hospital, we're fighting for a normal life," she said.
On Tuesday, the Petreikis family established a bank account, should anyone want to help Seth afford the surgery. But the family, which has never been able to afford regular health insurance from their family's flooring business, understands money is tight for most people.
"It would mean the world to us if parents would realize every moment you have with your child is precious," Tim Petreikis said. "Grab your child and look to the heavens in thanks. Every child, do our family a favor and honor, show gratitude and love to (your) parents."
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I just came across this article. This story is just so sad to me. What does everyone think about a surgery that is considered a life or death situation not covered by insurance?
Sometimes experimental treatments are covered here ,sometimes they are not. Those cases are reviewed. If it's not approved here, or cannot be done here, often they will pay to send you to a country where it is done. If it's something not considered main stream, such as holistic healing, then no, it probably would not be covered. It's all a case by case basis in those situations. There are no black and white rules.
It is so very sad. But I do disagree about the universal coverage countries. They limit what they will do just like insurance companies have no doubt. I so hope that people come through for this little child. One thing that is universal is kind hearts to help a little one.
Its is so sad. This one case made the news. Hopefully help will come. All the cases that did not make the news will not recieve help. Another fatality of our great healthcare in the US, imo. Its the same as murder to me. All over the almighty buck.
In countries with universal coverage, you never hear about cases like that, children are not left dying because the parents have no money. Not good to live in the US when you are a very sick child. I guess the insurance will finally approve the treatment once the child is dying and it's too late - as seen before in similar cases. Sickening!
Yes I know myself I could not obtain coverage for some of my treatments that are experimental under any form of health care coverage I have. However when the procedure is to save an infant's life the situation is entirely different and the humanity of the issue should be considered but in route bureaucracy its not. Generally it does make sense to consider these issues on an appeal basis but here there should be intervention so that the child does have coverage. Basically its the decent thing to do and there really shouldn't be more consideration than that.
Yes sad. Most parents I know would cut off their own arm to help their child and I can't imagine how helpless you'd feel in that situation. I hope that the coverage ends in people donating enough money for the surgery. It is particularly painful to hear of this happening to a child. Reality is that even if we had universal health care, he wouldn't get the surgery if it is deemed "experimental". Sad.
My heart hurts so badly for this family. When your child is ill, you will try and do anything to make them well. I hope they get what they need and this little boy recovers.
I have to say though, I can sort of understand why experimental treatments aren't covered. There are so many cons out there..people who take advantage of families with terminal children and so on, who will offer up all kinds of "experimental" treatments to save them. So this rule is necessary. It just doesn't sound like this is the case in this situation, so you wouuld think it could be reviewed and sorted out.
I have to say though, I can sort of understand why experimental treatments aren't covered. There are so many cons out there..people who take advantage of families with terminal children and so on, who will offer up all kinds of "experimental" treatments to save them. So this rule is necessary. It just doesn't sound like this is the case in this situation, so you wouuld think it could be reviewed and sorted out.
I agree. I can't even imagine what this family is going through. Their son's life is basically a ticking time bomb and each day is a gift from God. I can't imagine knowing that there is a procedure out there that could save him but finances are preventing him from potentially living. The article states that the family can't even afford regular health insurance. This is the real problem I think. Health insurance is too darn expensive! Something needs to be done and it's really sad that this poor babies life is at stake waiting for a miracle.
Sorry for the typos! That tends to happen when I use my IPhone rather than the computer.
That was supposed to be same not dame!
That was supposed to be same not dame!
They always say it's experiential when they don't want to pay for it! They did the dame thing to my dad and he has pretty good health insurance.
When he got prostate cancer and needed surgery they refused to do the robotic, laproscoptic surgery, even though it's been shown to be less invasive, less blood loss, quicker recovery, and less tome in the hospital. They said it was too experimental but it's been around for awhile now with good results. So instead, he had the regular surgery, had complications. They had to go back in, and he had a much longer hospital stay!
My prayers go to this family. This precious baby deserves a chance at life, just like any other. I really hope he gets his surgery.
When he got prostate cancer and needed surgery they refused to do the robotic, laproscoptic surgery, even though it's been shown to be less invasive, less blood loss, quicker recovery, and less tome in the hospital. They said it was too experimental but it's been around for awhile now with good results. So instead, he had the regular surgery, had complications. They had to go back in, and he had a much longer hospital stay!
My prayers go to this family. This precious baby deserves a chance at life, just like any other. I really hope he gets his surgery.
I hope Seth gets his surgery and I am sure many good people will donate towards it, it would be great if the surgeon could donate his expertise free , maybe some media attention would help also .thank you for putting this up...
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