As usual, we are willing to give lots of money, time, and attention to expensive special procedures like this while failing to provide good general health care to all our nation's children. I admire medical research and advancement as much as anyone, but we need to re-examine our priorities.
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What a wonderful story. Let's take note that there has been no ambiguity about Charley's being a person while still in the womb. Yes, a full human being. Science continues to affirm this.
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@Martin
Where did it say that?
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Anytime you hear about a woman's reproductive choice as though no one but her is involved, remember Charlie.
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@btb You use that fundamental word: Choice. I am sure the people involved here are glad they had a CHOICE.
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@btb I would say that what you hear most often from the right is the notion that only the fetus matters, and not the woman.
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@Concerned Citizen It's "Charley".
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That's incredible. I went to medical school in the 1960's and everyday I read of practices which were science fiction 50 years ago.
Let modern science and an enlightened public continue to share in these blessings of discovery. Let us keep our minds open and free to all ideas and reject any narrow mindedness to science.
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Your questions about when/if to tell Charley are common among parents of a special needs child. My son, now 32, had mild spina bifida (with a tethered cord) and several hand and arm defects. You'll know when to talk to Charley because he may start asking you questions like my son did. If not, you'll be able to gauge the right time. If he's anything like my son was, he wore it almost as a badge of honor and liked telling people about his 'little hand!' Best of luck to the Texas Royers and know that it all comes into perspective as time passes. Enjoy every second of Charley!
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I'm thrilled that this little boy has been able to have surgery, and that his parents are lucky enough to have an able child. May life continue to bless them.
So very sad that, after all these years of knowing that daily Folic Acid PREVENTS Spina Bifida that these usually crippled babies develop.
School, social media, churches, neighbors and families should know and teach this.
In this day and age, everyone of childbearing age should take at least 400mg of Folic Acid every day.
It's so sad for the infants and parents to go through this preventable problem
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@moorpheus
It's my understanding that a woman with a folic acid deficiency has a higher chance of giving birth to a baby with spina bifida, but that not all cases of spina bifida are caused by maternal folic acid deficiencies.
An analogous scenario might be that a child whose parent likes to read has a higher chance of enjoying reading themselves, but not all children who like to read have a parent that also enjoys reading.
For further reading: https://bit.ly/2sOhqar.
Thanks for giving me the opportunity to clarify my understanding of a complicated disease process!
Take care!
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@Elizabeth B. I wasn't clear. Indeed, no one can guarantee that daily folic acid will prevent 100% of spina bifida cases or anencephaly, but it is likely to prevent most cases.
But I wouldn't want to take the chance.
Also, Medical Associations must be very careful of their recommendations without clinical studies and their results lest they be held responsible.
Clinical studies on a vitamin/supplement will never be done because they are cost-prohibitive. There is no incentive for pharmaceutical company to take on the costs as they can never profit from such studies.
Best to you and have a lovely week.
M
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@moorpheus Clinical trials of nutrient supplements have been done many times -- including trials using folic acid. Here is just one of the many examples:
https://www.bmj.com/content/362/bmj.k3478
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I really like the photo! But I think the parents’ spines are going to go ouch!! I remember those days, with little walkers, and my spine went ouch!
But such a wonderful outcome. My spine recovered. Pretty much.
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"Science. Bah, humbug," Trump whined.
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Great story!!! This is a welcome change from the negativity in the world now.
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What a sweet reprieve from all the anxiety-producing news that assaults us each day.
It is difficult not to look at the lead photo of two loving parents and their sweet little boy and not feel the triumph of the human spirit and parental love.
Thank you for this much needed uplift.
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This is a lovely article. Itis joined with the editorial by Paul Krugman about lack of healthcare in rural Tennessee. These parents are obviously well off and can afford many things for this child. As a healthcare professional I am amazed at the advances in medicine since I first started. But, if this family had not had health insurance and means to pay for their share, what would have happened ? If they had been in rural Tennessee or any other remote area what would have happened?
Shouldn’t every child have the opportunity to live a normal healthy life? Shouldn’t every parent be able to give that to their child?
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Back in the day one of the most difficult decisions parents had to make was to "treat" spinal bifida in their newborn or not. Treatment was surgical closure of the open spine which did nothing to improve the profound neurological deficits but did decrease the risk ofdeath from CNS infection which was almost certain in the untreated child.
At that time there was a study in The Lancet that interviewed older parents whose child had spinal bifida and almost uniformly they stated if they knew what the child's life and their lives were going to be like they would have chosen not to treat.
Reagan was president at that time and his administration urged hospital workers to report parents who chose not to treat to some legal agency that then went to court to try to get a judge to overcome the parents' decision.
There is a long tradition of Republicans who tout small government and no government interference in our lives doing the opposite.
The comments on folic acid supplementaion are very correct.There is like most things a sprectum of how humans absorb and metabolize folic acid and any woman who is planning to get pregnant should take a supplement long before she stops using birth control.
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Charley has a pre-existing condition. If the GOP keeps "winning" elections, he will never be able to get health insurance.
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MEDICAL ADVANCES Are producing miraculous results and at time cures. It is heartening to read about a young family who were very fortunate to have found out about their son's condition of spina bifida while he as still in the womb. And more fortunate still that he was a candidate for a then-experimental neuro-microsurgery to correct the defects caused by the genetic disorder. From the descriptions in the article, it looks as if Charley is on target, developmentally. It is not unusual for some kids to earn to walk at 16 or 17 months. Charley and his family have much joy ahead of themselves; and also many challenges as his condition will require constant lifelong monitoring and care. Another miracle is that the family's healthcare plan covered the surgery and other medical costs. It's great to see a ray of light among the threatening gloom and doom in the world stage, and the extremel dangerous unstable political situation in the US.
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Finally. Some uplifting news among all the tragic news.
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@me Well expressed-I agree with me.
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I met a figure skating instructor several months ago who said she had many injuries and operations, including her back broken in 6 places from skating. Its a long road to be an instructor and she doesn't jump anymore.
Then, the other day, I overheard her say to a student that she had Spina Bifida as a kid. I was somewhat taken aback.
I had worked with toxicologists many years ago at the USEPA evaluating pesticides for adverse effects, including birth teratogenic effects. One day they described Spina Bidida and it really caught my attention.
I have worked in a small PT/OT/SLP pediatric clinic for the Latino community outside DC. While I don't have any patient interaction I have seen countless reports. Spina Bidida still catches my attention.
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Sending so much love to this family, their doctors and the counselors. Thanks for sharing this story.
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How do you tell a child about his diagnosis? I think there are other parents of children with Spina Bifida that can help you with this.
Please explore online and local groups at your regional children's hospital or rehab center. They have walked where you are walking, and they can give you lots of ideas and support.
I know that you would think that doctors are going to help you with this, but unless they are parents of children with chronic issues, they might not have the answer you need.
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Charley is a treasure! Health & happiness to him & his parents.
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Wonderful!!
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What a wonderful story! So, is the foetus a person or not?
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Irrelevant question. I know ambivalence is hard to tolerate these days.
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@Julio Torres PhD and would you have recommended that the mother be prosecuted had she miscarried? Your question is irrelevant to the situation.
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@Julio Torres PhD
It doesn't matter if it's a person or not. What matters is, does the pregnant woman want to continue to allow the other 'person' to use her body as life support.
Just as it would be my 'choice' to donate, or not, bone marrow or a kidney to save another person's life.
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Women, please start taking your prenatal vitamins at least a year before getting pregnant, if at all possible. Spina bifida can usually be prevented with adequate folic acid intake before and during pregnancy.
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Wow! A wonderful story that show how medical science can do amazing things for young Charley. I wish him all the strength he can muster to be a holy terror around the house as he runs around on strong legs and is loved by two parents who made one smart decision to try and help their son with a usually very damaging conditioning. I had a friend in grade school and note that I wrote had, who had spina bifida, and what she went through was heart breaking. So, to read this news article makes me cry tears of joy.
21
Money well spent for treatment as opposed to $100,000 a year for chemotherapy for someone my age (83). However, for her next pregnancy, mother should take folic acid before conception which pr3events almost all spina bifida.
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Charley is adorable. How precious.
16
We shouldn't expect them, but it is amazing to see what near-miraculous outcomes we can attain through medicine today. It seems that almost anything can be overcome.
And yet most of us expect the worse and worry about much we cannot control. "If I just could have known that everything was going to be O.K. If I could have seen him sitting here, playing now. I could have saved myself so many tears." Like so many of us, this young mother to be was understandably overwhelmed by the unknown, the feared, and the anticipation of suffering. It's hard, but we'd all be so much better off if we could avoid worrying about future outcomes that we cannot control. The saying, "she who worries about suffering risks suffering twice" is one that helps me be mindful to take action when I can and seek calm when an outcome is beyond my control and understanding.
20
A major question the article didn't address at all:
how much would this surgery and the follow-up, including other possible surgeries to deal with scar tissue, cost? This family must have outstanding health care coverage, possibly from the father's job?
My question has to do with the limits put on "miracle" surgeries like this by the constraints of cost and our failing healthcare system.
Like every other developed nation in the world we MUST give all citizens health coverage. We must get the profit motive out of pharmaceuticals and healthcare. It is a basic right----or should be.
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@RLiss You ask about the cost of such treatment, but ideally a fetal surgery such as this one has actually saved this family (and society) much higher costs down the road. Aside from the fact that withholding this newly-developed care would be morally wrong, we all benefit economically when preventative or early interventional measures can help avoid an outcome like the one Mr. Royer experienced as an EMT.
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@RLiss
Whatever the surgery (and followup surgeries if needed) may cost, it's probably less than the cost would have been for the lifelong medical care Charley would have needed if he had been born with severe spina bifida. He would have needed surgery to close his spine after birth, shunts in his brain, probably urinary catheterization for life, wheelchairs, treatment for frequent urinary and other infections, possibly special education if his brain development was affected. He would also have received SSDI and Medicare for life. The only cheap option for a fetus with a severe spinal defect is abortion. Treatment will be expensive one way or the other. I'd rather go for this option, which will give him and his parents a much better quality of life.
24
All the more reason to guarantee that this procedure be available to anyone who can benefit.
24
It is reassuring to read a story like this instead of the steady stream of news about immigrant babies and children being made to suffer by our government. Humans are capable of fulfilling such beautiful dreams and of creating such horrible nightmares.
34
Mr. and Ms. Royer, your love and eye to giving Charley the best life possible in spite of his diagnosis will yield volumes to him as he grows up! My now 7 y.o. son was also in utero surgery for spina bifida (L5/S1) at Vanderbilt. I just watched him finish a children's triathlon this weekend and it brought me to tears. He ran (!) a whole 1/2 mile after great effort in the swim and bike. Medical advancements have truly opened up great possibilities for a previously dire diagnosis. Our boys will not be defined by their disability.
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Very happy for Charley, his amazing parents and, of course, Bruce.
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Go Charley, Go Charley, Go Charley! Three cheers for Charley! And to Charley's parents, I am sure you are beyond over the moon and grateful for your son's "miracle" surgery. Good news all the way around at a time when we could certainly use more of that!
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This is a wonderful medical advance; thank goodness for science and medical research, and skilled surgeons.
Spina bifida can range from very mild to very severe. This is why pregnant women are given folic acid tablets, to help prevent neural tube defects in their fetus. You probably know someone who was born with mild spina bifida, even if you don't realize it. Once I rode in a car pool, and after casual conversation, we discovered two of the guys in the car had been born with spina bifida, but you would never know it. I think one of them had a mild limp.
Best wishes to little Charley.
40
Yes. Important for every woman of childbearing age to take enough folic acid every day of her life.
That's the only way to fend off this dreadful birth defect. I'm glad there's surgery for those infants who can prosper, but everyone would be better off by folic acid
5
The miracles of modern medicine!.....not unbelievable, but certainly amazing.
32
Amazing surgery from Dr Belfort and Dr Whitehead and extremely grateful for baby Charley that he is doing so well and with loving and caring parents. My grand daughter was born with a milder spina bifida. She is now 4.5 years old and doing fine except her urinary incontinence. I can completely understand the anxiety of the parents as the baby grows. Let us put faith in the continued medical research for babies born with spina bifida and keep praying for them as they grow
52
Amazing. Dedicated parents with marvelous medical support. Truly heartwarming.
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Congratulations to the Royer family and the doctors who performed Charley’s miracle surgery. Reading their story this morning is truly uplifting. I wish them all the best.
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Kudos to Drs. Belfort and Whitehead for developing this surgery and Best Wishes to Charley and his family.
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