There is an equation St. FX women’s basketball Lee Anna Osei continually instills in her players.
It reads E+R=O. Event plus response equals outcome. The idea is that if you respond to an event in the right way, the outcome will turn out favourably.
Osei, known as Coach Lee to her players and friends alike, has witnessed firsthand the lack of minority coaching hires across the Canadian sports landscape.
But that’s more of a long-standing fact than an event. And so a response never followed.
Then George Floyd was killed by a Minneapolis police officer, sparking a worldwide racial reckoning and increased calls for racial justice by the likes of Toronto Raptors president Masai Ujiri, Los Angeles Lakers star LeBron James and Canadian WNBAer Natalie Achonwa.
Those three in particular spurred Osei to a response: the formation of the Black Canadian Coaches Association (BCCA).
“I considered this a passion project to start. But then in realizing the change that it really can have, it’s not just a passion project of mine. It’s a passion project for hundreds of thousands of people,” Osei said.
The BCCA intends to increase opportunities for BIPOC coaches in Canada through its principles of networking, celebration and advocacy through allyship.
CBC Sports visual audit
In July, a CBC Sports visual audit revealed that only about 10 per cent of 400 top positions at 56 Canadian universities are held by a Black person, Indigenous person or person of colour.
“Everyone sees this as a gap that needs to be addressed — not just in Canada. We need to do better. But how we do that is probably the challenging thing right now,” Osei said.
In addition to initiatives such as the Black Female Coach Mentorship Program and The Racial Equity Project, the BCCA plans to maintain numbers on how many coaching positions in Canada are filled by minority candidates. Nothing official on that front currently exists.
Osei says the organization is also hoping to secure funding from the federal government.
Osei, 30, grew up in Toronto’s Jane and Finch neighbourhood. She says she first picked up a basketball “because honestly, it was either a ball or probably something not as positive.”
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One of Osei’s first coaching influences was her Grade 6 principal who co-starred as basketball coach. Now, she’s put together a 12-year coaching career herself.
“The most passionate, the most impactful, the most helpful people I’ve met have all been coaches, and that said something about the Canadian context of coaching because there’s not a lot of professional jobs out there,” Osei said.
Corey Grant wants one of those jobs. Currently the offensive co-ordinator of McMaster’s football team, Grant, first and foremost, says he wants the pandemic to end so he can return to the field.
But the former CFLer would also like to rise the ranks and chart a path for future Black athletes and coaches.
“Representation matters because you want to see what you can be. And sometimes if we’re seeing lack of representation at different levels, especially in coaching and then head coaching, as a player and as a former player, I start to think, ‘Well, maybe I can’t be that head coach.’ As an athlete, you never want to say ‘can’t,’ said Grant.
Grant, 44, grew up in Stoney Creek, Ont., near Hamilton. He spent 11 years as a CFL receiver from 1999-2009 with the Tiger-Cats and Saskatchewan Roughriders, winning a pair of Grey Cups in the process.
In the years since, Grant has begun his coaching career, going from McMaster receivers coach to Tiger-Cats running backs coach and back to McMaster in his current role.
As a player, Grant said his sole focus on playing made him block out the various microaggressions he encounters every day as a Black man.
“Sometimes you shake it off because, hey, I got to focus on the game, I got to focus on practice. And now you start to realize, you know what, that’s not good for your mental health,” Grant said.
High school memory
Certain incidents can’t be blocked out though, such as one high school memory Grant says he recalls like it was yesterday.
It was after a school dance and Grant noticed a crowd packed with screaming people in the parking lot. As he walked towards the noise, some classmates stopped him: “don’t get him,’ they said, “leave him, he’s an athlete.”
“It was some guys wearing swastikas and beat up some South Asian kids and ripped off their turbans and beat them to a pulp in the parking lot. You felt helpless. You couldn’t do anything,” Grant recalled.
Grant went home and punched his garage door out of frustration. It was the only thing he could do.
As assistant director of the BCCA, Grant aims to prevent that feeling of helplessness among Black children — specifically daughter Qiawna, 12, and son Devonn, 10, who are both aspiring athletes.
“It’s doing it through advocacy, through our relationships, through celebration and networking, because sometimes there’s that thought of, ‘it’s just me going through this. Nobody else is there with me. I have to deal with this,’ and then that’s where that mental health piece comes in,” Grant said.
Grant’s parents were his first coaching inspirations. Father Lynford was a steel worker and mother Hermine worked various jobs when Corey was growing up, but now runs a nursing home.
Their hard work stuck with Corey, who is the oldest of four siblings, plus two foster sisters and a foster brother.
As a player with the Tiger-Cats, Grant met Bernie Custis, the first Black professional quarterback in the modern era, and first-ever in the CFL.
Custis, who played with NFL Hall of Famer Jim Brown at Syracuse, is also one of few Black head coaches in Ontario University Athletics (OUA) history.
“None of the [current football] head coaches in the OUA are of colour. So then who is having those conversations and leadership position with the players that are on their team? Who is having those conversations about George Floyd, social justice and injustices and equity?”
OUA announces task force
In August, the OUA announced the creation of a Black, biracial and Indigenous task force to emphasize diversity throughout the conference.
The desire to educate is perhaps what drew Grant to Osei and the BCCA. Having one centralized network to disperse information to coaches throughout Canada could become an invaluable tool.
Not to mention the work the BCCA is hoping to do in providing more opportunities for BIPOC coaches.
“Our goal is really simple,” Osei said. “We’re going to use the platform and leverage other organizations and individuals who believe in our mandate to find the very few people of colour in leadership positions and we want to celebrate them and we want other people to know, hey, that can be you.”
Grant watched recently as just two of seven open NFL head coaching positions went to BIPOC candidates. Eric Bienemy, the Black offensive co-ordinator of the Kansas City team going for its second straight Super Bowl, has now been passed over two years in a row.
Grant says how Bienemy handled that adversity is something he’s drawing from as he waits for his own head coaching opportunity to arise.
“I’m not satisfied with where I’m at, but I’m content right now with where I’m at,” Grant said. “I’m going to continue to move forward. And when it’s my time, I’m going to be ready to shine.”
Since May, a common reprieve in the fight for social justice is that the conversation can’t be left as a moment — it must be a movement.
Osei takes that one step further.
“It’s not a movement. It’s a lifestyle. It’s understanding that this system was built on systemic oppression. And there are so many tangible ways that can combat it.”
“We’re not pointing the blame here. We’re just stating a fact.”
With the BCCA, Osei’s response to systemic racism in Canada is well underway. And if E+R=O holds firm, a positive outcome should follow.
The 52-year-old from Saint-Louis-de-Kent, who was born missing an arm and with malformations in her other limbs, says after a lifetime of fighting for acceptance and compensation, there isn’t anything left for her to be afraid of.
“I fought all my life to be to be looked at as a normal person,” she said. “This has been a battle from the beginning.”
Hébert is one of three New Brunswickers who were rejected from a 2015 federal compensation program for thalidomide victims. They have been arguing even since that they deserve to be recognized, compensated and given assistance for their far-reaching physical disabilities.
‘I took a drug, Noëlla’
Hébert grew up in rural Kent County knowing she was different and knowing her mother carried an enormous burden of guilt.
“I can remember my mom always said, ‘I took a drug, I took a drug, Noëlla, I took a drug.’ But me, I didn’t understand that … you always have in the back of your mind, ‘Why did she take that pill?'”
Thalidomide, promoted as a treatment for morning sickness, was approved and arrived in Canada as samples in 1959.
Canada was one of the last countries to pull it from the shelves in 1962, but Hébert and others believe it was still in circulation in rural New Brunswick for years after.
Her mother, Marie, said that’s what the local doctor gave her in 1967.
“She took sick,” said Hébert. “She had a very sore stomach. She had insomnia. She couldn’t sleep. And my grandma had just died. So that was the creation of all that.”
She explained that in the 1960s, when the village doctor gave you a bottle of pills, you didn’t ask questions.
“People were ignorant. They thought that medication were miracle cures,” said Hébert. “Back then, when you had an ailment if you could have the help of a doctor — that was God.”
There is no record that proves that the bottle of pills given to Hébert’s mother in 1967 contained thalidomide. There were few pharmacies in rural New Brunswick, and it was common for doctors to give medication directly to their patients. The lack of a prescription kept Hébert and 166 others from being part of a federal compensation program for victims in 2015.
“It was just a bottle of pills that was given from one hand to the other,” she said. “And so I did not have the documents that the government wanted but I still was a thalidomide victim.”
‘We got to push’
A 30-minute drive from Saint-Louis-de-Kent, Paul Richard was born in Rogersville in 1969 with malformed arms.
He believes his shorter-than-normal right arm, twisted hand and malformed left arm are the result of his mother also taking thalidomide.
“She was given a pill to alleviate nausea during her pregnancy and back then, well, they just took whatever doctors gave them and didn’t question anything,” he said.
Richard had three major surgeries on his right arm as a young child and remembers telling his parents when he was seven years old that he wasn’t going to have any more.
“I made do with what I had,” he said. “I played hockey all my life — I wasn’t Wayne Gretzky but I had fun.”
As far as he knows, his legs are fine. Richard jokes he’s always been able to “run from trouble.”
The husband and father of two worked as a heavy equipment operator at his father’s business when he finished school. When he could no longer cope with the physical demands, he changed careers and became a highway maintenance supervisor and now works in an office.
Richard said he probably would have given up his battle for compensation, but Hébert is his mentor and if she keeps fighting, he will too.
“Thank God for Noëlla. I would give up but she keeps on telling me, ‘We got to push.'”
‘My body is my record’
Hébert, Richard and another New Brunswick man, from Val-Comeau, near Tracadie-Sheila, were among the 167 people who were rejected from the 2015 Thalidomide Survivors Contribution Program, which included a lump sum payment of $ 125,000, ongoing support payments and access to a medical assistance fund.
We’re not fraudsters, we are victims.-Noëlla Hébert
Even though their mothers have both signed affidavits saying they took thalidomide while they were pregnant, and even though genetics reports and doctors all point to thalidomide as the cause of their disabilities, neither Richard nor Hébert qualified.
“They put us all in the same basket that we would all try to fraud the system,” Hébert said of the third-party the government hired to determine who would qualify for the government program.
“But we’re not fraudsters, we are victims. It’s really really clear to see my body is my record — When you see me you can’t unsee me.”
Gesturing to her missing left arm, she points out the tip of a finger that pokes out of her shoulder. Her right arm looks normal, but has four skeletal malformations, including a thumb that is more like a fifth finger.
Her “good leg” does not have a hip and she has required reconstructive surgeries to allow her to walk. On the other side, she has a very short leg that is attached to her torso, again with no hip. She has undergone a surgery to turn her small foot backwards so she can use her heel as a makeshift knee in her prosthetic leg.
After 52 years, Hébert explained, her continued fight isn’t about the money.
She wants Canadians to recognize that she and others have lived their entire lives with severe disabilities and discrimination.
Hébert considers herself one of the “lucky” survivors, because she was born with a “firecracker personality” and a family who saw her as normal.
“My mom says that … when she looks at me, yes, I’m deformed. But when she looks aside she pictures me as a normal child. That’s the picture she had to create in her mind to be able to cope with this.”
Hébert laughs as she remembers her big brother’s reaction when, as a child, she told him she wanted to learn to swim.
“He said, ‘OK, let’s go.’ There was no, ‘How are we going to do that?’ or ‘You can’t do it.'”
Hébert went on to attend university and to become a lawyer. It was one of the most difficult times of her life not because of the academics, but because it was nearly impossible for her to walk from her dorm at the University of Moncton to her classes.
“When you only have one leg and you have to walk in three inches of snow and the leg’s not going — that was my biggest, biggest challenge,” she said. “How many times I fell on the snow, in the snow with my 50 pounds of books on my back and came to my dorm crying and called my dad, my mom.”
Again, Hébert’s family encouraged her not to give up when she was ready to quit.
“My dad would say, ‘Well go to bed, pray, put some A535 [medicated cream] and the first thing I want you to do when you open your eyes, call me and tell me how is it going.’ And just on cue the next day it was always going a little bit better.”
Hopes rise and fall
In January 2019, Hébert and Richard were hopeful once again when then minister of health Ginette Petipas-Taylor announced a new compensation program for those turned down in 2015.
We didn’t ask for that pill to be introduced in Canada, but we had to deal with the consequence.– Paul Richard
The Canadian Thalidomide Survivors Support Program promised a one-time payment of $ 250,000, annual payments based on the person’s level of disability and access to a medical assistance fund.
But their hopes were quickly extinguished. This time the hurdle wasn’t missing documents, it was birth dates.
The first step of the preliminary screening for the new program is that you were born within five years of March 2, 1962, when thalidomide was pulled from shelves in Canada.
Noëlla Hébert, a lawyer born with one arm and malformed limbs is one of three New Brunswickers still fighting in court to be recognized as victims of thalidomide. 3:44
“They said, ‘Well if the drug was still on the shelves after five years that we pulled it off the market, it should have been expired.’ And then they added nine months for the birth of the child,” Hébert said.
Anyone born after Dec. 21, 1967, will not be considered for compensation in this latest program. Hébert was born five weeks too late, on Jan. 31, 1968.
“It’s the most ridiculous thing I’ve ever seen but I’m not surprised,” she said. “We supposedly die about 10 years to 15 years younger of what we are supposed to. They’re just playing with time.”
Quest for closure, compensation
“We always miss the boat,” said Richard.
For him, the compensation would “help immensely,” but more important would be to finally be recognized as a victim.
“I know everyone wants something from the government,” he said. “We didn’t ask for that pill to be introduced in Canada, but we had to deal with the consequence.”
Richard understands the fact that his birthday also falls outside of the eligible dates is a hurdle, but he hopes it won’t be insurmountable.
He is calling on the Canadian government to consider what life was like back in the 1960s in rural New Brunswick. It was a time when doctors handed out medication, and no one threw anything away.
“All those medications could have stayed in a medicine cabinet for a few years and when they needed it, they would take it.”
Like Hébert, he worries his body will continue to deteriorate, and he will need more support as he gets older.
Judge urges government to reconsider
The legal battle for Hébert and Richard continues. This month they appealed a ruling by Federal Court Justice Michael Phelan that would effectively close the door to them ever receiving any compensation.
Lawyer Alyssa Tomkins, a partner with Caza Saikaley, is representing Hébert and Richard, along with another New Brunswicker, pro bono.
She explained the 167 people who were refused government compensation in 2015 had launched a class-action lawsuit, which was settled in May.
The settlement order applies to all members of the suit, including Hébert and Richard, and means they have to accept the new 2019 program, even though it excludes them and 40 others based on their birth dates.
Tomkins is arguing that based on the negative or “deleterious” effects of the settlement on so many class members, the order should be set aside.
“Effectively, the settlement provides little benefit, we’ve alleged, to class members within the birth date framework. And yet it’s devastating to those outside it,” she said.
Let’s work with integrity and let’s show our hearts. We may have done mistakes in the past but it’s never too late to show compassion.– Noëlla Hébert
Tomkins worries that if the settlement holds up, it will make it “extremely difficult” for victims to ever get the government aid they are entitled to.
In his ruling, Phelan also raised concern about the birth date parameters set by the 2019 compensation program and said there was a “less than clear” explanation from government as to why it was necessary.
“Canada’s explanation for its rigid approach, while coldly scientific, lacked the compassion for the individual which the government espoused,” he wrote.
“Some of the individuals failed to qualify by a matter of a few weeks — their stories were tragic and compelling. Class counsel recognized the problem but on this issue Canada was intractable.”
Phelan said if it was within the power of the court, he would have struck out the date parameters.
“Regrettably, the court is powerless to do anything about this issue, other than to encourage a compassionate reconsideration.”
Phelan goes on to acknowledge that class members are advancing in age and have increasing requirements because of their disabilities.
“Time is not their friend, if not yet their enemy.”
Despite this setback, Hébert is undeterred and ever hopeful that the many politicians she has met with over the years will reconsider and put an end to this “nonsense.”
“It’s never too late. We can say, ‘The past was the past. Let’s talk with integrity now. Let’s work with integrity and let’s show our hearts.’ We may have done mistakes in the past but it’s never too late to show compassion.”
‘I am a hero of history’
Hébert’s sense of humour is still in tact as she talks about some of the accommodations she needs to continue to live in her own home.
“I don’t have a ramp to bring my scooter with me in my truck. I don’t have a ramp outside my door. I don’t have the [modified] steering wheel because my steering wheel is too heavy for me to turn on my SUV.”
“It costs an arm and a leg — which I don’t have,” she jokes.
She knows the body she was born with will never allow her to do what her spirit would like, but she still looks forward to a day with simple accommodations — raised garden beds, for instance, so she can grow plants on her deck.
“It’s about the recognition of being who I am,” she said.
“I am a hero of history. I’ve conquered the world with a not normal body and instead of looking at us with eyes of pity, they should say to us, ‘Oh my God — you’re champions. You should have a medal.'”
WARNING: Graphic photos of baby Ebrar before surgery appear below
A Syrian refugee whose baby was born with her brain growing outside her skull says her child faces lifelong challenges two years after undergoing risky brain surgery.
Safaa Jaber calls her daughter, Ebrar, an angel.
“I think she’s very strong and patient, and I think she’s not human,” Jaber said in Arabic through an interpreter from her Winnipeg home this week.
“She’s an angel to endure all that suffering that she’s been through.”
She says Ebrar, 2, is deaf in one ear and will likely suffer developmental delays for the rest of her life. Nevertheless, she feels blessed that her baby is alive and believes Ebrar will get better.
‘Two miracles, not just one’
Ebrar was born with encephalocele, a neural tube defect that causes part of the brain to protrude through an opening in the skull.
Jaber was told by doctors in Winnipeg that her baby would not likely survive after birth. But she did.
According to the Centers for Disease Control and Prevention, one in 12,200 babies are born in the United States each year with encephalocele.
It’s not clear how many cases are reported in Canada every year. But the Canadian Organization for Rare Disorders believes the number of birth defects is slightly lower in Canada because of the quality of prenatal care in this country.
Ebrar endured a complicated marathon brain surgery at Children’s Hospital in June 2017 when she was seven months old.
Jaber says doctors drained the fluids surrounding her brain and inserted it back inside her skull. She had a 50/50 chance of surviving.
And despite all odds, she survived that, too.
“It was two miracles, not just one,” Jaber said.
‘She won’t be able to walk’
The toddler now has scars along her skull, but Jaber said she she looks healthier now.
Since the surgery, Jaber says, specialists and a physiotherapist regularly monitor Ebrar’s progress.
But the toddler, who is currently being tube fed, appears to be facing a long road to recovery.
The Winnipeg doctors who performed the surgery on Ebrar two years ago did not want to be interviewed at the time but Jaber said doctors told her there would be risks associated with the surgery.
Jaber says doctors recently told her that Ebrar will lose hearing in both ears.
“The doctors tried several times to check if she can hear or not, but nothing was detected,” she said. “But I can feel that she sometimes hears stuff around the house. She jumps when she hears a noise.”
While it’s not clear whether Ebrar is aware of her surroundings, Jaber says she knows her daughter can feel her and responds to her touch: “I can see that she sometimes hears and responds to our voices.
“Sometimes I worry — she used to not be able to cough on her own but now she’s getting better,” she said. “She will be [developmentally] delayed for sure but doctors don’t know exactly how much.
“She won’t be able to walk.”
The surgery can be very complex, according to a medical expert in the United States.
“If the doctor was suggesting it was risky, then almost certainly there were blood vessels going out and they were afraid about the risk of bleeding and stroke with the operation,” said Dr. Mark Proctor, chief of neurosurgery at Boston Children’s Hospital.
Proctor said his clinic is known for treating children with encephalocele, and has performed similar procedures on children from all over the world.
Proctor had previously told CBC News that it is difficult to predict whether children like Ebrar can lead a normal life after surgery. In some cases, a child can have lifelong neurological development problems, he said.
Jaber says it’s been a stressful couple of years. She would like to have more help at home but adds that she doesn’t mind caring for Ebrar.
“I don’t trust to leave her with anybody,” she said. “I have to be with her because I’m the only one who understands her.
“I worry that if somebody else takes care of her, they wouldn’t know what she needs or how to help her.”
Jaber came to Canada in 2016 with three other kids as government-sponsored refugees from Syria. Ebrar was born in Winnipeg.
She also cares for her niece, Maryam, who survived a bomb blast in Syria, and is currently getting treatment for severe burns all over her body.
Jaber says her husband, who is from Turkey, came to Winnipeg on a visa that is set to expire soon. She worries about whether her husband will be able to stay in Canada.
But, she says, despite all the struggles and worry she is happy to be in Canada.
Jaber praises doctors and staff at Health Sciences Centre Winnipeg for their support, but says she needs more help to care for her toddler at home.
She is trying to get home care for her daughter, as well as a special adjustable bed since Ebrar spends most of her time lying on her back in a crib.
Jaber says she knows her baby is different than other kids, but she said that doesn’t matter to her.
Cayde and Ella Snowboy are the first two babies to be born under the Cree Board of Health and Social Services’ midwifery program.
They’re also cousins — their moms, Christina and Louisa Snowboy, are sisters.
They were pregnant at the same time, and signed up for midwifery care instead of the usual doctor’s visits during pregnancy and delivery.
“I was so happy that my family was there,” Christina said. “They supported me.”
The midwifery program, launched in September 2018, is part of efforts by the Cree health board to bring birthing back to the territory.
It gives Cree women with healthy pregnancies the choice to have their babies in Chisasibi, the largest Cree community in the region and the only one with a hospital, rather than down south.
“There were lots of people there while I was giving birth, lots of women,” said Christina.
“I was happy that I had lots of support.”
For Louisa, giving birth in Chisasibi meant being back in her own bed, with her healthy newborn and her older children, just four hours after giving birth — rather than having to stay for several weeks in a town almost 1,000 kilometres from home.
Louisa’s two older children were born in Val-d’Or. When midwifery services became available in her home community, she signed up right away.
Her positive experience helped convince her sister Christina, a first-time mom, to give birth in the community.
“[The birth] was indescribable. It was ecstatic. It was powerful,” said Jessyka Boulanger, the midwife who assisted Louisa.
“It was really like a circle of women supporting that life coming. It was so beautiful.”
Choosing where to give birth
Boulanger is one of four midwives in Chisasibi, and is also the head of midwifery services for the Cree Health Board. She travels by plane a lot, and often witnesses the moment when a mom steps off of a flight from the south and introduces her newborn to family for the first time, in an airport.
She says having the choice to give birth at home, with family close by, can be healing.
“The Cree, like many Indigenous communities, experienced trauma from residential schools, from colonization, separation of families. The systematic evacuation of women during pregnancy can re-open those traumas,” said Boulanger.
“Now, you can make that decision for yourself. You can decide where you feel the most secure, what has meaning for you, where you should be, and with whom. We’re able to give back that choice.”
When Louisa was pregnant, she and her family decided that her mom, Annie Sam, would be the one to welcome the baby. She says that having her mom catch the baby was deeply important to her.
“It’s wonderful that my two grandchildren were born here in our town,” said Annie Sam. “I wish more women would try to give birth here.”
Traditional Cree birthing knowledge and practices are integral to the midwifery program. During pregnancy, women can learn from elders about naming rituals, ways of wrapping a baby, and how to treat rashes using traditional remedies.
The program is in high demand, with midwives now caring for almost half of Chisasibi pregnancies, or about 25 women. The community’s population is about 5,000 and growing quickly.
What was lost for so many years is coming back, said Boulanger.
“To be able to share that celebration of life, bring it back to the community, to the family, instead of [birth] being a separation or stress or worry. That it can be, once again, a joyful event.”
The Cree Health Board is planning to expand midwifery services to other communities in Eeyou Istchee, and to train Cree midwives. Birthing homes will be built in Waskaganish, Mistissini, and Chisasibi over the next few years.
Brazilian doctors are reporting the world's first baby born to a woman who received a uterus transplanted from a deceased donor.
The case, published in The Lancet medical journal, involved connecting veins from the donor uterus with the recipient's veins, as well as linking arteries, ligaments and vaginal canals.
Eleven previous births have used a transplanted womb but from a living donor, usually a relative or friend.
Experts say using uteruses from women who have died could make more transplants possible. Ten previous attempts using deceased donors in the Czech Republic, Turkey and the U.S. have failed.
Baby almost a year old
The baby girl was delivered last December by a woman born without a uterus because of a rare syndrome. The woman — a 32-year-old psychologist — was initially apprehensive about the transplant, said Dr. Dani Ejzenberg, the transplant team's lead doctor at the University of Sao Paulo School of Medicine.
"This was the most important thing in her life," he said. "Now she comes in to show us the baby and she is so happy."
Doctors perform the womb transplant procedure at the hospital in Sao Paulo, Brazil Dec. 15, 2017 in this picture handout obtained today. ( Hospital das Clinicas da FMUSP/via Reuters)
The woman became pregnant through in vitro fertilization seven months after the transplant. The donor was a 45-year-old woman who had three children and died of a stroke.
More transplants planned
The recipient, who was not identified, gave birth at 35 weeks and three days by cesarean section. The baby weighed nearly six pounds. Doctors also removed the womb, partly so the woman would no longer have to take anti-rejection medicines. Nearly a year later, mother and baby are both healthy.
Two more transplants are planned as part of the Brazilian study.
Uterus transplantation was pioneered by Swedish doctor Mats Brannstrom, who has delivered eight children from women who got wombs from family members or friends. Two babies have been born at Baylor University Medical Center in Texas and one in Serbia, also from transplants from living donors.
Swedish doctor Mats Brannstrom pioneered uterus transplantation. (Adam Ihse/AFP/Getty Images)
In 2016, doctors at the Cleveland Clinic in Ohio transplanted a uterus from a deceased donor, but it failed after an infection developed.
"The Brazilian group has proven that using deceased donors is a viable option," said the clinic's Dr. Tommaso Falcone, who was involved in the Ohio case. "It may give us a bigger supply of organs than we thought were possible."
The Cleveland program is continuing to use deceased donors. Falcone said the fact that the transplant was successful after the uterus was preserved in ice for nearly eight hours demonstrated how resilient the uterus is. Doctors try to keep the time an organ is without blood flow to a minimum.
The mysteries of pregnancy
Other experts said the knowledge gained from such procedures might also solve some lingering mysteries about pregnancies.
"There are still lots of things we don't understand about pregnancies, like how embryos implant," said Cesar Diaz, who co-authored an accompanying commentary in the journal. "These transplants will help us understand implantation and every stage of pregnancy."
Experts estimate that infertility affects around 10 to 15 per cent of couples of reproductive age worldwide. Of this group, around one in 500 women have uterine problems.
Before uterus transplants became possible, the only options to have a child were adoption or surrogacy.
A Chinese researcher claims he helped make the world's first genetically edited babies — twin girls born this month, and with DNA he says he altered with a powerful new tool capable of rewriting the very blueprint of life.
If true, it would be a profound leap of science and ethics.
A U.S. scientist said he took part in the work in China, but this kind of gene editing is banned in the United States because the DNA changes can pass to future generations and risks harming other genes.
I feel a strong responsibility that it's not just to make a first, but also make it an example. Society will decide what to do next.– He Jiankui, researcher
Many mainstream scientists think it's too unsafe to try, and some denounced the Chinese report as human experimentation.
The researcher, He Jiankui of Shenzhen, said he altered embryos for seven couples during fertility treatments, with one pregnancy resulting thus far. He said his goal was not to cure or prevent an inherited disease, but to try to bestow a trait that few people naturally have — an ability to resist possible future infection with HIV, the AIDS virus.
He said the parents involved declined to be identified or interviewed, and he would not say where they live or where the work was done.
No peer review
There is no independent confirmation of He's claim, and it has not been published in a journal, where it would be vetted by other experts. He revealed it Monday in Hong Kong to one of the organizers of an international conference on gene editing that is set to begin Tuesday, and earlier in exclusive interviews with The Associated Press.
"I feel a strong responsibility that it's not just to make a first, but also make it an example," He told The Associated Press. "Society will decide what to do next" in terms of allowing or forbidding such science.
Some scientists were astounded to hear of the claim and strongly condemned it.
It's "unconscionable … an experiment on human beings that is not morally or ethically defensible," said Dr. Kiran Musunuru, a University of Pennsylvania gene-editing expert and editor of a genetics journal.
"This is far too premature," said Dr. Eric Topol, who heads the Scripps Research Translational Institute in California. "We're dealing with the operating instructions of a human being. It's a big deal."
However, one famed geneticist, Harvard University's George Church, defended attempting gene editing for HIV, which he called "a major and growing public health threat."
"I think this is justifiable," Church said of that goal.
Hereditary genetic changes
In recent years scientists have discovered a relatively easy way to edit genes, the strands of DNA that govern the body. The tool, called CRISPR-cas9, makes it possible to operate on DNA to supply a needed gene or disable one that's causing problems.
It's only recently been tried in adults to treat deadly diseases, and the changes are confined to that person. Editing sperm, eggs or embryos is different — the changes can be inherited. In the U.S., it's not allowed except for lab research. China outlaws human cloning, but not specifically gene editing.
He Jiankui, who goes by JK, studied at Rice and Stanford universities in the U.S. before returning to his homeland to open a lab at Southern University of Science and Technology of China in Shenzhen, where he also has two genetics companies.
The university said He's work "seriously violated academic ethics and standards," and that it plans to investigate. A spokesperson for He confirmed he has been on leave from teaching since early this year, but he remains on the faculty and has a lab at the school.
Zhou Xiaoqin, left, loads Cas9 protein and PCSK9 sgRNA molecules into a fine glass pipette as Qin Jinzhou watches at a laboratory in Shenzhen on Oct. 9. (Mark Schiefelbein/Associated Press)
The U.S. scientist who worked with him on this project after He returned to China was physics and bioengineering Prof. Michael Deem, who was his adviser at Rice in Houston. Deem also holds what he called "a small stake" in — and is on the scientific advisory boards of — He's two companies.
The Chinese researcher said he practised editing mice, monkey and human embryos in the lab for several years, and has applied for patents on his methods.
He said he chose embryo gene editing for HIV because these infections are a big problem in China. He sought to disable a gene called CCR5 that forms a protein doorway that allows HIV to enter a cell.
Protection from HIV
All the men in the project had HIV and all the women did not, but the gene editing was not aimed at preventing the small risk of transmission, He said. The fathers had their infections deeply suppressed by standard HIV medicines and there are simple ways to keep them from infecting offspring that do not involve altering genes.
Instead, the appeal was to offer couples affected by HIV a chance to have a child that might be protected from a similar fate.
He recruited couples through a Beijing-based AIDS advocacy group called Baihualin. Its leader, known by the pseudonym Bai Hua, told the AP that it's not uncommon for people with HIV to lose jobs or have trouble getting medical care if their infections are revealed.
Zhou adjusts a monitor showing a video feed of Qin moving a fine glass pipette containing Cas9 protein and PCSK9 sgRNA to an embryo under a microscope at a laboratory in Shenzhen on Oct. 9. (Mark Schiefelbein/Associated Press)
Here is how He described the work:
The gene editing occurred during IVF, or lab dish fertilization. First, sperm was "washed" to separate it from semen, the fluid where HIV can lurk. A single sperm was placed into a single egg to create an embryo. Then the gene editing tool was added.
When the embryos were three to five days old, a few cells were removed and checked for editing. Couples could choose whether to use edited or unedited embryos for pregnancy attempts. In all, 16 of 22 embryos were edited, and 11 embryos were used in six implant attempts before the twin pregnancy was achieved, He said.
Tests suggest that one twin had both copies of the intended gene altered and the other twin had just one altered, with no evidence of harm to other genes, He said. People with one copy of the gene can still get HIV, although some very limited research suggests their health might decline more slowly once they do.
Several scientists reviewed materials that He provided to The Associated Press and said tests so far are insufficient to say the editing worked or to rule out harm.
They also noted evidence that the editing was incomplete and that at least one twin appears to be a patchwork of cells with various changes.
"It's almost like not editing at all" if only some of certain cells were altered, because HIV infection can still occur, Church said.
A microplate containing embryos that have been injected with Cas9 protein and PCSK9 sgRNA is seen in a laboratory in Shenzhen on Oct. 9. (Mark Schiefelbein/Associated Press)
Church and Musunuru questioned the decision to allow one of the embryos to be used in a pregnancy attempt, because the Chinese researchers said they knew in advance that both copies of the intended gene had not been altered.
"In that child, there really was almost nothing to be gained in terms of protection against HIV, and yet you're exposing that child to all the unknown safety risks," Musunuru said.
The use of that embryo suggests that the researchers' "main emphasis was on testing editing rather than avoiding this disease," Church said.
Even if editing worked perfectly, people without normal CCR5 genes face higher risks of getting certain other viruses, such as West Nile, and of dying from the flu. Since there are many ways to prevent HIV infection and it's treatable, those other medical risks are a concern, Musunuru said.
There also are questions about the way He said he proceeded. He gave official notice of his work long after he said he started it — on Nov. 8, on a Chinese registry of clinical trials.
It's unclear whether participants fully understood the purpose and potential risks and benefits. For example, consent forms called the project an "AIDS vaccine development" program.
No experience running clinical trials
The Rice scientist, Deem, said he was present in China when potential participants gave their consent and that he "absolutely" thinks they were able to understand the risks.
Deem said he worked with He on vaccine research at Rice and considers the gene editing similar to a vaccine.
"That might be a layman's way of describing it," he said.
Both men are physics experts with no experience running human clinical trials.
He, left, and Zhou work a computer at a laboratory in Shenzhen on Oct. 10. (Mark Schiefelbein/Associated Press)
Chinese scientist He said he personally made the goals clear and told participants that embryo gene editing has never been tried before and carries risks. He said he also would provide insurance coverage for any children conceived through the project and plans medical followup until the children are 18 and longer if they agree once they're adults.
Further pregnancy attempts are on hold until the safety of this one is analyzed and experts weigh in, but participants were not told in advance that they might not have a chance to try what they signed up for once a "first" was achieved, He acknowledged. Free fertility treatment was part of the deal they were offered.
He sought and received approval for his project from Shenzhen Harmonicare Women's and Children's Hospital, which is not one of the four hospitals that He said provided embryos for his research or the pregnancy attempts.
'We think this is ethical'
Some staff at some of the other hospitals were kept in the dark about the nature of the research, which He and Deem said was done to keep some participants' HIV infection from being disclosed.
"We think this is ethical," said Lin Zhitong, a Harmonicare administrator who heads the ethics panel.
Qin Jinzhou, shown during an interview at a laboratory in Shenzhen on Oct. 9, is an embryologist in He's lab. (Mark Schiefelbein/Associated Press)
Any medical staff who handled samples that might contain HIV were aware, He said. An embryologist in He's lab, Qin Jinzhou, confirmed to the AP that he did sperm washing and injected the gene editing tool in some of the pregnancy attempts.
The study participants are not ethicists, He said, but "are as much authorities on what is correct and what is wrong because it's their life on the line.
"I believe this is going to help the families and their children."
If it causes unwanted side-effects or harm, He said, "I would feel the same pain as they do and it's going to be my own responsibility."
It's been nearly six months since Taya first asked her mother to find her a friend with three thumbs.
To find a friend who is unique — and yet also just like her.
"And we managed to find somebody, didn't we?" Alicia Oakes says, nudging her daughter.
Taya, 6, smiles so hard you hear it in her voice she says yes.
In 10 days it will be her birthday but, before then, the Dartmouth, N.S., girl hopes to meet the little boy who shares the same condition: being born with an extra thumb.
Taya, 6, was born with a duplicated thumb and chose not to have reconstructive surgery. Through social media, her mom just found her a friend nearby who has the same condition. (Alisha Oakes/Facebook)
About one in 3,000 children are born with thumb duplication, according to Toronto's Hospital for Sick Children. Many will have reconstructive surgery before age two, making the condition more rare in older children — and less likely that Taya and her family would find someone who shares what she calls her natural advantage at Mario Kart.
But Oakes expanded her search by posting Taya's request to Facebook.
"She is so strong and confident, but often I wonder how her school years might play out," Oakes wrote in her post.
She said they were looking for "someone we could sit down with, have a play date, grab an ice cream and go for a walk. It doesn't matter to us; she would just like to have that connection."
Wyatt's mom responded to Alicia Oakes's search. He and Taya are expecting to meet for the first time this week. (Alana Michelle/Facebook)
And then Wyatt's mother got in touch. The pair are about the same age, Oakes says, and their homes are within a 30-minute drive.
When she learned that her mother had found someone like her, Taya "hugged me really tight and burst into tears," Oakes says.
The first thing Taya plans to tell her new friend is: "I really like your double thumbs."
Taya's parents didn't learn about her double thumbs until she was born. When it came time to make a decision about surgery — a complex procedure that sometimes involves fusing parts of the two digits — Oakes says she didn't want to make a choice without her daughter's consent.
"She chose to keep it," Oakes says. "We had the discussion many times and I like to keep an open mind and communication for her to always let me know if it's bothering her, but it doesn't hold her back."
She plays soccer and takes martial arts classes. She's collecting colouring books, toys and other items for kids who are patients at Halifax's IWK Health Centre. And she plans to be a vet when she grows up.
Taya loves her 'special thumb' but says she feels sad when other kids are frightened by her hand. (Alisha Oakes/Facebook)
There are people who ask her questions about her hand and there have been a few instances of bullying at school. But Taya is aglow at the thought of having a friend who understands why she loves her "special thumb."
"I always want to keep it, because I'm always special," she says.
“I’ve gotten to the point… I’m like, ‘OK, shut the f**k up and take your own advice,'” she quipped. “Like, I love Kourtney, but… I’m going to figure it all out, I promise you. We’re all going to learn. So some advice is great, but it’s also not what you say, it’s how you say it.”
For Ed and Mary Casagrande, the birth of their middle child, Emma, was a moment of celebration. The Casagrandes were told when Mary was five months pregnant that their baby had Down syndrome.
Now, four years later, Emma continues to be a bright light in their family.
“She brings joy to our family every day. She lights up a room anywhere she goes. She is a blessing. She completes our family,” said Ed Casagrande, a Toronto resident and member of the board of directors of the Canadian Down Syndrome Society.
“There’s nothing to be sorry for.”
On Friday, the society launched a new campaign, entitled “Anything But Sorry: The ‘S’ Word,” that includes a YouTube video, a website with information on how to welcome a baby born with Down syndrome into the world, Facebook birth announcements that can be filled out by parents, even if their babies are now children, and congratulatory greeting cards that can be ordered.
Warning: Graphic language
Casagrande acknowledges that the video includes swear words but says it is trying to make the point that the birth of a baby with Down syndrome is a happy occasion, not a sorrowful one, and it’s time Canadians changed their perception of such events.
“We chose some colourful language on purpose,” he said. “You can say anything you want to parents who have had a child with Down syndrome, but the word you really shouldn’t say is, ‘Sorry.'”
Kirk Crowther, the society’s national executive director, based in Calgary, told CBC Toronto that the video is part of Canadian Down Syndrome Society week. Two other videos will be rolled out this week that feature parents of babies with Down syndrome.
“We are hearing from parents in the office and they are telling us that there has been no congratulations, from the doctor who delivered the baby, to the nurses, to family members,” he said.
“We are really trying to educate the public to say that sorry is something you don’t say. It’s a new child. It’s a birth to be celebrated. It’s not the loss of a child at all. We are trying to change the perceptions of Canadians.”
Emma Casagrande, 4, is a middle child, with an older brother and a younger brother. Her father says: ‘She completes our family.’ (CBC)
Crowther said the idea is to get parents of babies with Down syndrome the support they need, especially from members of their communities.
“Congratulations should absolutely be the first thing that anybody hears.”
‘You just had a baby!’
Crowther said the outlook for people with Down syndrome has changed greatly in the last 30 years.
“People with Down syndrome have such a positive future now. There are options to get post-secondary education, there are options to get married, there are options for employment. All of those things have really changed. This is just a step in that evolution.”
In the YouTube video, there is a warning about inappropriate language and then the first frame asks: “What do you say to parents who just had a child with Down syndrome?”
A series of actors, all with Down syndrome, answer the question. “You can say almost anything,” says one. “Like, holy sh-t,” says another. “You just had a baby!” says a third. “Sh-t, yeah,” says a fourth.
“Congratu-f–kinglations!” says the first actor. A few other suggestions are made.
‘The only bad word is sorry’
“The truth is, the only bad word is sorry,” says one of the actors. Then all of the actors say, “Sorry” in low voices.
“You’re supposed to be celebrating,” says one. “Woohoo,” says another. “So, don’t be sorry about a baby,” says one more. “Be happy,” suggests another.
“Because every baby deserves a warm f–king welcome,” says yet another.
Crowther says the society is taking “a little bit of a risk” by using language that could be called vulgar, but he says an edge is needed to the campaign to make a point. And so far, it’s being well received.
Last year, the society won about 15 awards for its video, “Down Syndrome Answers.” It was considered Canada’s most awarded not-for-profit video in 2016. “We are hoping this does the same,” he said.