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Conjoined twins with fused brains separated; surgeons practiced for months in virtual reality

Arthur and Bernardo finally get to see each other face to face.

Image by sasint/Canva

Surgeons prepared to separate 3-year-old conjoined twins in Brazil using virtual reality.

The things human beings have figured out how to do boggles the mind sometimes, especially in the realm of medicine.

It wasn't terribly long ago that people with a severe injury had to liquor up, bite a stick, have a body part sewn up or sawed off and hope for the best. (Sorry for the visual, but it's true.) The discoveries of antibiotics and anesthesia alone have completely revolutionized human existence, but we've gone well beyond that with what our best surgeons can accomplish.

Surgeries can range from fairly simple to incredibly complex, but few surgeries are more complicated than separating conjoined twins with combined major organs. That's why the recent surgical separation of conjoined twin boys with fused brains in Brazil is so incredible.


The twins, Bernardo and Arthur Lima, are almost 4 years old and have never seen one another's face. They've spent their lives conjoined at the top of their heads, facing opposite directions. Born as craniopagus twins (joined at the cranium), their brains were also fused together, making their separation extremely complex. According to the BBC, they've been cared for at the Instituto Estadual do Cérebro Paulo Niemeyer (Paulo Niemeyer State Brain Institute) in Rio de Janeiro for the past two and a half years.

Surgeon Noor ul Owase Jeelani is the founder of medical charity Gemini Untwined, which funded the surgery. He helped lead the team of nearly 100 medical workers who worked for months to prepare for the boys' separation, which was one of the most complicated of its kind.

Jeelani told the BBC that it was the first time surgeons in separate countries practiced by operating in the same "virtual reality room" together, wearing VR headsets.

"It's just wonderful," he said. "It's really great to see the anatomy and do the surgery before you actually put the children at any risk. You can’t imagine how reassuring this is for the surgeons. To do it in virtual reality was just really man-on-Mars stuff."

Watch Jeelani explain how they prepared for the procedure:

Prior attempts to separate the twins had been unsuccessful, making the surgery even more challenging due to scar tissue. However, after multiple surgeries that took more than 33 hours collectively, the boys were successfully separated in June.

“It was without a doubt the most complex surgery of my career,” said neurosurgeon Gabriel Mufarrej of the Paulo Niemeyer State Brain Institute, according to EuroNews. “At the beginning, nobody thought they would survive. It is already historic that both of them could be saved."

Jeelani told the BBC that the boys' heart rates and blood pressure were "through the roof" for four days after the surgery—until they were reunited and touched hands.

According to Reuters, Bernardo and Arthur are the oldest twins with fused brains to be successfully separated. They will spend the next six months in rehabilitation.

Congratulations to the Lima family and to the global team that combined dedication, perseverance and the miracle of modern technology to create a brighter future for these young boys.


This article originally appeared on 08.04.22

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Health

No, the CDC did not mandate kids get the COVID-19 vaccine to go to school

Loads of misinformation keeps floating around about COVID-19 vaccines.

Photo by CDC on Unsplash

States set immunization requirements for school entry, not the CDC.

It's hard to log onto social media these days without being hit with a firehose of misinformation, especially when it comes to COVID-19. Getting accurate information during a global pandemic with a novel virus that keeps mutating is a challenge, and people's (sometimes understandable) distrust of the government, the media and various institutions certainly doesn't help.

But that doesn't mean there's no such thing as accurate information. A lot of what's floating around out there about COVID-19 is simply and verifiably wrong. As Kaiser Family Foundation President and CEO Drew Altman said, “It just isn’t enough for us to be in the business of putting out good information. We have to now also be in the business of countering misinformation and deliberate disinformation as well."

Unfortunately, studies of Facebook and Twitter have found that misinformation and disinformation spread faster and are more likely to be shared than true information. So, let's sort through some of the myths and facts about one of the biggest topics out there right now—COVID-19 vaccines and children.

Myth: The CDC is adding the COVID-19 vaccine to the mandated vaccine schedule for kids who attend school.

Fact: The CDC’s Advisory Committee on Immunization Practices (ACIP) recommended updating the 2023 childhood and adult immunization schedules to include additional information for approved or authorized COVID-19 vaccines. That is not the same as adding the vaccine to school vaccine requirements. The immunization schedule is a best practice recommendation, not a requirement.

In fact, the CDC can't require kids to get vaccines. State and local jurisdictions decide what vaccines are required for school entry, not the CDC. States do look to the CDC's recommendation for guidance in making decisions, but just because a vaccine is recommended by the CDC doesn't mean schools will automatically require it. (For example, flu shots aren't required for most schools even though they're recommended by the CDC for school-aged children. And the HPV vaccine has been on the CDC's recommended schedule since 2006, yet only four states require it for school.)

Myth: The CDC added the COVID-19 vaccine to the Vaccines for Children program, which means kids will have to get it.

Fact: The ACIP unanimously voted to add the COVID-19 vaccine to the Vaccines for Children program, but that doesn't mean it's required. Vaccines for Children is a program that provides free vaccines to kids from low-income and uninsured families. Adding the COVID-19 vaccine just means it's included in that free program so more parents who want their kids to get it will be able to.

Myth: The COVID-19 vaccine is dangerous and kids are dying from it.

Fact: No, they're not. Let's look at the specific claims on this front.

First, the myocarditis question. Let's go to the experts at the American Heart Association for that one. According to its website, the most recent studies have shown that the risk of myocarditis from the vaccine is low and the risk from myocarditis is very low (all cases were considered mild and all recovered). But most importantly, studies have shown that the risk of myocarditis from COVID-19 infection is higher than it is from the vaccine.

If parents are concerned about the risks of myocarditis from the vaccine, they hopefully have even more concern about the risks of it from COVID-19 itself, since we know that COVID-19 can damage the heart.

Second, the "young people are dying suddenly at an alarming rate" claim. There are multiple ways in which this rumor has spread multiple times, so it's hard to tackle all of them at once. But if you've heard that vaccines are causing SADS (Sudden Arrhythmic Death Syndrome, which some have erroneously referred to as "Sudden Adult Death Syndrome"), read this fact check and the accompanying links. Also, note the fact that the SADS Foundation—an organization literally dedicated to this syndrome—recommends everyone with conditions linked to SADS get the COVID-19 vaccine.

People don't need to trust the government or the media to not fall for misinformation and disinformation about the COVID-19 vaccines. The most telling thing to me is that every reputable medical organization and association in the U.S. that I've checked recommends the COVID-19 vaccine. Every single one.

In fact, in July, the American Medical Association, the American Academy of Pediatrics and the American Academy of Family Physicians issued a joint letter urging families to get the vaccine for kids ages 6 months and up. These organizations are not the government or the media or the pharmaceutical companies. They are the nation's top experts on medical care for families. They're the ones we should be looking to for guidance on medical decisions, not politicians, social media influencers or cable news hosts.

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Health

Global health equity champion Paul Farmer was a great doctor, but an even better human being

PBS News Hour/YouTube

The world bids a sad farewell to Dr. Paul Farmer, champion of global health equity.

You can often tell a lot about a person's life by how the world responds to their death. Over the weekend, when I started seeing a flood of social media messages from healthcare professionals that included words like "devastated" and "gutted," it was clear that someone of influence in the medical world had passed. I'm not in healthcare, but even I recognized Dr. Paul Farmer's name, largely from this quote of his:

"The idea that some lives matter less is the root of all that is wrong in the world."

After spending decades working and living in various countries around the world, making sure people in underdeveloped nations had access to quality healthcare, Dr. Farmer passed away from an acute cardiac event in his sleep in Rwanda at age 62. His death was like a seismic event in the field of global health, launching a tsunami of grief and remembrance felt around the world, from heads of state who met with him to fellow physicians who worked with him to individuals whose lives he saved.

"It is hard to find the words to express the sad news of the passing of Paul Farmer—the person, the Doctor, the philanthropist. He combined many things hard to find in one person," wrote Paul Kagame, president of Rwanda.

Farmer was physician, a professor, an anthropologist and a fierce advocate for the world's poor. In 1987, he cofounded Partners in Health, one of the world's leading global health and social justice organizations dedicated to bringing high-quality healthcare to those who need it most. Farmer's philosophy was straightforward: The fact that poor people die of illness we have effective treatments for is unacceptable. Farmer's life's work was a testament to his belief that where you live and how much money you have should not determine your right to healthcare.

But Farmer's advocacy work was also much more personal than that. He didn't preach about global equity from atop an ivory tower; he worked on the ground, at the grassroots level, doing hands-on medical care in some of the poorest parts of the world.

Much of Farmer's work involved getting effective AIDS treatments to patients in Haiti and Rwanda in the face of pushback from those who felt it was too expensive or that cultural differences would get in the way. Farmer refused to accept inequity and did everything he could to alleviate it.

“Human rights violations are not accidents; they are not random in distribution or effect," he wrote in "Pathologies of Power: Health, Human Rights and the New War on the Poor." "Rights violations are, rather, symptoms of deeper pathologies of power and are linked intimately to the social conditions that so often determine who will suffer abuse and who will be shielded from harm.”

He was uncompromising in his belief that every human being, regardless of circumstances, should have access to the best healthcare humanity has to offer. Being born into or living in poverty does not give anyone less of a right to health, and if we have effective treatments for illness and disease, everyone should have access to them.

He touched countless lives—those he treated and those he accompanied in the field of service. Often it was people in the medical field he trained with, but he even inspired people outside of healthcare to use their privilege and know-how to better the lives of others.

When you pass away and everyone who met you has only the most glowing things to say about you, you know you've lived a good life. The world has lost not only a great doctor, but a champion of global health equity who serves as an example to us all.

"His vision for the world will live on through Partners in Health," Sheila Davis, Partners in Health CEO, wrote in a statement. "Paul taught all those around him the power of accompaniment, love for one another, and solidarity. Our deepest sympathies are with his family.”

Watch PBS News Hour's remembrance of Dr. Farmer below, and for more details of his extraordinary work, I highly recommend Tracy Kidder's profile of him in The New Yorker. The man was truly a legend of a human being in all the best ways possible.

Rest in peace, Dr. Farmer. Thanks for showing us how it's done.

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Well Being

Woman shares 15 things no one tells you about having a miscarriage

Photo by Zohre Nemati on Unsplash, @kristen4moore/Twitter

There are lots of things we all should know about the reality of miscarriage.

Miscarriage is a tough topic that many are hesitant to talk about. The private nature of losing a pregnancy and the complex feelings that come along with it creates a silence that leaves those experiencing it feeling alone and those not experiencing it ignorant of the reality.

According to the Mayo Clinic, about 10-20% of known pregnancies end in miscarriage, which means we all know someone who has or will experience it at least once, even if we don't experience it ourselves. To best support those who do, it's important that we all have a better understanding of what a miscarriage can entail, logistically, emotionally and even financially.

Twitter user Kristen R. Moore shared 15 things she learned about miscarriage that she didn't know before going through one herself, and her thread has prompted others to share their experiences as well.

"Today, I paid over $1000 out of pocket for my miscarriage," she wrote. "They didn't tell me it would cost so much to lose a baby. Here are other things they don't tell you about miscarriages."

Then she shared a thread describing 14 other eye-opening realities she went through during and after her miscarriage.

"1. It takes a long time. It's not an event that's suddenly over. It's like a fucking marathon. A sad, dehydrated marathon with nothing on the end but empty.

2. Practitioners who support birth don't necessarily know how to support miscarriage—the joy of birth is so stark when compared to the grief and loss of miscarriage. Some of y'all need training.

3. There is medication to help the miscarriage along. It is used for abortion, too, and your pharmacist may treat you like you're entering an abortion clinic when you want more information about how it works.


4. The most commonly used medication is officially prescribed for ulcers; all use for miscarriage management is "off books." This gives your pharmacist permission (tacit or explicit) to deny you information about vaginal (rather than oral) use.

5. The informational inserts for the medication—Misoprostol—warn you about how it can trigger miscarriage. If you have a decent pharmacist, they'll give you supplemental information that they print off from the internet.

6. When you've been through infertility treatments, a natural pregnancy doesn't always feel like a miracle. Sometimes it feels like a tightrope walk, a risk, a pain waiting to happen.

7. Miscarriage is so, so lonely. Y'all. The emptying of your body like that…bless it. You really DON'T want to talk about it, but you sometimes want to scream about it. Where can we go to scream?

8. You want it to speed up and slow down all at once. Hurry, hurry, hurry up, and then no, don't go--please don't go.

9. Non-birthing parents are ignored in the miscarriage experience: their grief and pain and suffering is real, too.

10. When the miscarriage happens at 13 weeks, the weight stays on; you still have to pull out the pregnancy pants, as a reminder of your previous maternity state.

11. No one talks about it, so you don't know how to talk about. People say the wrong thing, but you're so sad that you don't want to say, 'don't ever say that to a person miscarrying.'

12. Related, do not recommend: 'But you can try again soon, right?' upon hearing the news. Also, do not recommend: 'Everything happens for a reason.' Or 'This is all part of God's plan.'

13. There are humans who feel like little angels, the tech who asks if you want to hear the lack of heartbeat, the friend you can scream with, the partner who'll hold you in your grief. Mostly they feel like blips on a terrible painful road.

14. It's expensive and painful (like birth) and at the end you don't get anything except a bill and a new playlist called, 'Shit to help you get through the baby that never was.'"

It's rare that we get the inside look at miscarriage that Moore's thread offers, and her courageous sharing will undoubtedly help both those who have experienced it to be seen and those who haven't to understand.

Others added to the thread with their own details as well.

Some commenters pointed out how their work provided no paid time off so they either had to work right after their miscarriage or take unpaid time off (and still get flack for it). Reason #3,782 why the lack of universal guaranteed paid leave in the U.S. is ridiculous. (In the meantime, New Zealand offers bereavement leave after a pregnancy loss. Why Americans aren't marching in the streets daily over our healthcare and paid leave situation is a mystery.)

The cruelty of that reality is compounded by the fact that miscarriage is not a one-time event that is then over and done with. For some people, in so many ways, the trauma of it ends up being relived over and over again.

These are things that we all need to understand for ourselves, for our loved ones and for anyone we know who might experience losing a baby through miscarriage.

The full picture is even more complex, of course. Everyone's emotional experience is unique, and how someone feels about a miscarriage depends on many factors, so broad generalizations aren't necessarily helpful. For people with an unwanted pregnancy, a miscarriage might even come as somewhat of a relief. However, that doesn't change the physical or financial realities of going through one.

Whatever the circumstances, having greater knowledge of what a person might be going through when they have a miscarriage can help us offer more compassionate support. Thank you, Kristen Moore, for being open about your experience and getting the ball rolling on this important conversation.

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