19/11/2015 10h55 - Atualizado em 19/11/2015 16h32

'Não muda em nada o amor', diz casal que adotou criança com microcefalia

Menino foi adotado com 1 mês de vida e só depois foi descoberto problema.

Foram confirmados no Piauí 10 casos de microcefalia em apenas um mês.

Ellyo Teixeira e Patrícia Andrade

Do G1 PI

Vicente Oliveira, Jeane Rodrigues e o filho João Vinicius (Foto: Ellyo Teixeira/G1)

João Vinicíus Alves, 3 anos, foi diagnosticado aos três meses de vida com microcefalia, uma anomalia caracterizada por um crânio de tamanho menor que a média. A notícia pegou de surpresa os pais do garoto, que o adotaram quando ele tinha apenas um mês de nascido.

O diagnóstico da microcefalia veio acompanhado ainda de outra constatação: João era portador de autismo e com o passar do tempo foi apresentando crises epiléticas, sequela que, conforme os médicos, pode se manifestar em algumas crianças vítimas da anomalia.

 

Para Vicente Oliveira e Jeane Rodrigues, pais adotivos do garoto, a doença não mudou em nada o amor e carinho pelo filho. Pelo contrário. O casal logo fez um plano de saúde e agora a rotina diária se divide entre os cuidados com João e as atividades do pequeno restaurante que eles mantém na própria casa no bairro Aeroporto, Zona Norte de Teresina.

“A mãe biológica me entregou o bebê e após os procedimentos judiciais sumiu e nunca mais apareceu. A partir daquele dia eu passei a ter uma criança para chamar de filho. Só depois de três meses descobrimos que o menino tinha microcefalia, mas isso não mudou em nada nossa vida, ou seja, só aumentou nosso amor e carinho por ele”, falou Jeane.

João é acompanhado por um fonoaudiólogo, fisioterapeuta e ainda pelo neurologista. As sessões acontecem duas vezes por semana e o pequeno ainda faz uso de quatro tipos de medicação. Tudo faz parte do tratamento para melhorar o desenvolvimento e qualidade de vida, já que a microcefalia é uma doença irreversível.

Vicente e Jeane garantem que mesmo diante de algumas dificuldades a família vive feliz. Para eles, os pais não devem encarar a doença como um problema, mas como uma oportunidade que a vida está dando para que demonstrem dedicação, doação e parceria com uma criança igual às outras, mas que necessitará de mais atenção.

Vicente Oliveira e o pequeno João Vinícius, de 3 anos (Foto: Ellyo Teixeira/G1)

“Acreditamos que o João foi enviado por Deus, pois mesmo com microcefalia ele vive normalmente. É uma criança ativa, inteligente e carinhosa com todos. Sempre soubemos que poderíamos viver normalmente e que isso não seria um problema. Amamos o nosso filho e daremos todo o carinho para ele”, falou Vicente.

Casos no Piauí

A Secretaria Estadual de Saúde (Sesapi) confirmou o registro de 27 casos de microcefalia em recém-nascidos no Piauí em 2015, sendo 10 casos registrados apenas nas últimas três semanas. O aumento no número de casos foi de 350% comparando com os registros do ano passado quando foram confirmados apenas seis.

O aumento significativo do número de casos no Nordeste fez o Ministério da Saúde decretar recentemente emergência em saúde pública.Diante da alta incidência de bebês nascendo com essa anomalia, a Sesapi instituiu em parceria com outros órgãos como a Universidade Federal do Piauí (UFPI), Fundação Municipal de Saúde (FMS), Maternidade Dona Evangelina Rosa (MDER), Maternidade Santa Fé, Ciamca, Laboratório Central do Estado (Lacen) e Ministério da Saúde, o Comitê de Operações de Emergência em Saúde-Microcefalia.

Além do Piauí, outros estados do Nordeste têm registrado um aumento nos casos de microcefalia. Pernambuco, Rio Grande do Norte e Paraíba também relataram preocupação com os últimos dados.

As causas ainda estão sendo investigadas. Uma das hipóteses relaciona o aumento de casos a infecções por zika vírus - vírus que foi identificado pela primeira vez no país em abril deste ano.

Segundo documento divulgado pela Secretaria de Vigilância em Saúde da Secretaria Estadual de Saúde de Pernambuco (SEVS/SES-PE), parte das mulheres que tiveram bebês com microcefalia apresentaram erupções na pele durante a gravidez. Apesar de este ser um dos sintomas do zika vírus, não há evidências suficientes para associá-lo à microcefalia, de acordo com o órgão.

Como saber se o bebê tem microcefalia?

A microcefalia é diagnosticada quando o perímetro da cabeça é igual ou menor do que 33 cm – o esperado é que bebês tenham pelo menos 34 cm. Mas atenção: isso vale apenas para crianças nascidas a termo (com 9 meses de gravidez). No caso de prematuros, esses valores mudam e dependem da idade gestacional em que ocorre o parto.

O que causa a microcefalia?

Na maior parte dos casos são infecções adquiridas pela mãe, especialmente no primeiro trimestre da gravidez, que é quando o cérebro do bebê está sendo formado. Toxoplasmose, rubéola e citomegalovírus são alguns exemplos.

Outros possíveis causadores são abuso de álcool e drogas ilícitas na gestação e síndromes genéticas como a síndrome de down.

Anomalia é diagnosticada quando perímetro da cabeça é igual ou menor do que 33 cm (Foto: Tv Globo)

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CEBID - Centro de Estudos em Biodireito

11/11/2015 17h02 - Atualizado em 13/11/2015 17h38

Governo declara emergência em saúde por casos de microcefalia

Houve aumento de casos de microcefalia, principalmente em Pernambuco.

Ministro anunciou estado de emergência em saúde pública em coletiva.

Do G1, em São Paulo

O Ministério da Saúde afirmou, em coletiva de imprensa nesta quarta-feira (11), que está investigando o aumento de casos de microcefalia no Nordeste. Trata-se de uma anomalia caracterizada por um crânio de tamanho menor que o a média. O ministro da saúde, Marcelo Castro, declarou estado de emergência em saúde pública por causa da situação. "Todas as hipóteses estão sendo avaliadas", disse o ministro.

O ministério foi acionado pela Secretaria de Estado da Saúde de Pernambuco, que observou o aumento drástico da anomalia nos últimos quatro meses. Foram identificados 141 casos em recém-nascidos em 44 municípios de Pernambuco este ano.

Segundo o ministro, a média de casos para o estado era de 10 por ano, o que representa um aumento incomum. "Estamos de fato em uma situação inusitada em termos de saúde pública", disse Castro. A situação tem sido acompanhada pelo Ministério desde o dia 22 de outubro.

Situação na PB e no RN está sendo investigada

Além da situação de Pernambuco, há relatos de profissionais de saúde sobre um possível aumento de casos de microcefalia na Paraíba e no Rio Grande do Norte, porém esse aumento ainda não foi documentado e o Ministério da Saúde investiga as ocorrências.

Segundo o ministério, o estado de emergência em saúde pública garante que os serviços de saúde tratem a questão da microcefalia com prioridade. A investigação das possíveis causas do aumento vai ser feita em conjunto por equipes do Ministério da Saúde e dos governos estaduais e municipais.

Hipótese de ligação com zika vírus

Sobre a hipótese que tem sido discutida pela comunidade médica, de que o aumento de casos de microcefalia poderia estar relacionado a infecções por zika vírus - vírus que foi identificado pela primeira vez no país em abril deste ano - os representantes do ministério afirmaram que ainda é precipitado atribuir o evento a essa causa.

•  

Estamos de fato em uma situação inusitada em termos de saúde pública"

Marcelo Castro, ministro da Saúde

O vírus já foi confirmado em 14 estados brasileiros desde abril, segundo informação divulgada pelo Ministério da Saúde na semana passada durante seminário organizado pela Fundação Oswaldo Cruz (Fiocruz), no Rio de Janeiro.

Segundo documento divulgado pela Secretaria de Vigilância em Saúde da Secretaria Estadual de Saúde de Pernambuco (SEVS/SES-PE), parte das mulheres que tiveram bebês com microcefalia apresentaram erupções na pele durante a gravidez. Apesar de este ser um dos sintomas do zika vírus, não há evidências suficientes para associá-lo à microcefalia, de acordo com o órgão.

De acordo com o ministério, entre os casos de microcefalia registrados recentemente, alguns são graves, no entanto ainda não é possível observar um padrão claro em relação ao grau de microcefalia mais frequente na situação atual.

Entenda o que é a microcefalia

Microcefalia é uma condição médica que se caracteriza por um crânio menor do que o tamanho médio, geralmente por causa de uma falha no desenvolvimento do cérebro. O problema pode estar associado a síndromes genéticas ou a outros fatores como abuso de álcool e drogas durante a gravidez ou a infecção da gestante por rubéola, catapora ou citomegalovirus.

Crianças que nascem com microcefalia podem ter o desenvolvimento cognitivo debilitado. Não há um tratamento definitivo capaz de fazer com que a cabeça cresça a um tamanho normal, mas há opções de tratamento capazes de diminuir o impacto associado com as deformidades.

Segundo o Instituto Nacional de Distúrbios Neurológicos e AVC dos Institutos Nacionais de Saúde dos Estados Unidos (Ninds-NIH), algumas crianças acometidas pela anomalia podem ter algum nível de incapacitação. Outras podem se desenvolver de forma similar a outras crianças e ter inteligência normal.

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CEBID - Centro de Estudos em Biodireito

Delusional but autonomous

Delusional but autonomous

by Michael Cook | 7 Nov 2015 | 

Can a confused, lonely, bi-polar, sick 73-year-old with religious delusions refuse an operation which will save his life?

Yes, says the UK’s Court  of Protection. A man known as Mr B is a diabetic with a severely infected leg. His life can only be saved if it is amputated below the knee, according to the best medical advice. Without this, he will die of the infection, possibly within a few days. Mr B has no one else in the world to care for him. “He has no next of kin. No one has ever visited him in hospital and no one ever will,” observes the judge.

In the opinion of the judge he does not have the mental capacity to make a rational decisions about his illness. On the other hand, Mr B, who is not afraid of dying and bears his pain with great fortitude, does not agree with the doctors:  

“I don't want an operation. I'm not afraid of dying, I know where I'm going. The angels have told me I am going to heaven. I have no regrets. It would be a better life than this. I don't want to go into a nursing home, [my partner] died there. I don't want my leg tampered with. I know the seriousness, I just want them to continue what they're doing. I don't want it. I'm not afraid of death. I don't want interference. Even if I'm going to die, I don't want the operation.”.

The next question, then, is what is in Mr Bs “best interests”. A person in full possession of his faculties would probably answer “amputation”. But the judge points out that

“Mr B's mental health and well-being will be further compromised following an operation. Even if he does not suffer some of the risks of amputation (phantom pain etc.), the loss of his foot will be a continual reminder that his wishes were not respected. Further to that, his religious sentiments will undoubtedly continue and he will believe that the amputation was carried out against the Lord's wishes.”

On the balance, the judge therefore decided that Mr B’s best interests were to do what he wanted rather than what was good for him. His right to autonomy trumps his right to health.

“I am quite sure that it would not be in Mr B's best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone's behalf and just fighting them. Enforcing treatment in this case would surely be the latter.”

There is no information about what happened to Mr B. Presumably he joined his angels within a few days after the judgement was handed down. 

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CEBID - Centro de Estudos em Biodireito

Euthanasia debate flares up in Australia

Euthanasia debate flares up in Australia

by Xavier Symons | 14 Nov 2015 | 

The debate over legalising euthanasia has flared up again in Australia, with both opponents and advocates making spirited contributions.

Last Wednesday, Australian doctor Rodney Syme appeared on the popular talk show Q and A and publically admitted to having supplied Nembutal to a man. "I have openly gone and stated to the police that I have given a man Nembutal," he said. "I have described the circumstances in which that happened.”

Syme says he is attempting to provoke a test-case for euthanasia law in Australia.

Another panellist on the show, television personality Andrew Denton, defended proposed euthanasia law reform against the so-called ‘slippery slope’ argument.

“I would remind you of the core things about this law. It is voluntary. You have to be an adult who is compos [mentis], who understands what they’re talking about,” he said.

Denton has become a new prominent advocate for euthanasia in Australia, after he went on a lengthy ‘study tour’ of Belgium and the Netherlands to learn about the implementation of euthanasia law there.

But critics too have made their contributions. In the past week two prominent doctors published opinion pieces in national mastheads arguing against legalising euthanasia. Palliative Care specialist Dr. Ranjana Srivastava argued that legal euthanasia is a poor fix for a broader societal problem.  

“The terminally ill patients who suffer doubly are those who are ostracised by their relatives, estranged from their children, divorced by their spouse and left to shoulder their burden alone. There is no easy solution to this intractable problem, which is really a failure of modern society and its fraying relationships rather than a limitation of medicine. Downplaying the value of palliative care will confuse patients and do them a disservice.”

Similarly, Dr Richard Chye, director of palliative care at St. Vincent’s Hospital in Sydney, argued that euthanasia would turn death into a technical problem to be fixed, rather than an existential reality that patients must come to terms with (and that good palliative care can make more bearable).

I agree there are problems with how Australians are dying, but I think access to good-quality palliative care can change that. Australians want to die at home but need better support services to do so. Carers need respite and your postcode often determines access to services. These are the rights we are currently denied. This is what we should be getting up in arms about.

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CEBID - Centro de Estudos em Biodireito

Dutch doctors puzzled by religious immigrants’ attitude toward euthanasia

Dutch doctors puzzled by religious immigrants’ attitude toward euthanasia

by Michael Cook | 15 Nov 2015 | 3 comments

Dr Maria van den Muijsenbergh   

Dutch doctors who are accustomed to offering sick patients the option of euthanasia find it difficult to cope with immigrants with very different belief systems. Writing in the magazine of the Dutch right-to-die association, Relevant, general practitioner Maria van den Muijsenbergh says that many of the Netherlands’s numerous immigrants are more tolerant of pain because they offer their lives to God and that they believe that euthanasia is wicked.

She says in an interview:

‘The Netherlands is a country with liberal opinions about euthanasia and a country where it is not taken for granted to be religious. Nearly all non-western migrants are religious. Not only Muslims but also orthodox–Christian Armenians and others coming from Africa. On the deathbed religion plays a major role. God or Allah decides when you have to go. Euthanasia is therefore wicked. The problem with migrants is they do not even want palliative sedation. For a Dutch doctor that can be difficult’

[I had a Muslim patient] who wanted to stay lucid for Allah. I gave him a little morphine but that did not work. He stayed tight in the chest [breathless]. It was very hard to look at for the children and for me. And very hard to do nothing. The man took it very well though. As doctor you have to ask yourself is it [hard] for the patient or for me?’

Terminal sedation, or rendering patients unconscious while they starve to death, is a common alternative to euthanasia with a needle. However, immigrants don’t want this either. “God has given you this body and you have to look after it” is the thought behind. So they will not stop eating or drinking. “And that is difficult to a doctor,” she says.

She remembered one Armenian patient: “He could not swallow his food and could hardly drink. His family wanted me to insert a drip. The patient wanted it also. For me it was hard, in my eyes inserting a drip in a dying person is not good care. But the role of the family is big.”

Does the existence of euthanasia actually make the last days of immigrants more difficult? Dr van den Muijsenbergh says that “Patients often refuse morphine because they think the doctor may kill them then.”   

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Transgender man stunned as 'bloated tummy' turns out to be baby bump a decade after transitioning from womanhood

Transgender man stunned as 'bloated tummy' turns out to be baby bump a decade after transitioning from womanhood

• 23:01, 12 NOV 2015
• UPDATED 07:35, 13 NOV 2015
• BY ROD MCPHEE

Kayden Coleman and husband Elijah plan to tell 22-month-old Azaelia about her unusual family when she is five

Not your average family: Elijah (l) with baby Azaelia and husband Kayden, who gave birth

Staring at the reflection of the baby bump in the mirror, the proud parent-to-be felt a rush of nervous excitement. Like any mum or dad, the prospect of bringing a baby into the world felt overwhelming.

But this was never going to be an ­ordinary pregnancy – because for almost a decade Kayden Coleman had been living as a man.

Not only had he told all his friends and family that he was transgender, he had been on testosterone jabs for five years, had grown facial hair and was about to have a double mastectomy.

But then nature dropped a bombshell and, despite years of taking male hormones, Kayden became pregnant.

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Now he and husband Elijah, 27, are besotted with 22-month-old Azaelia and are planning to tell her all about her unusual family when she is five.

Read more : Brave teen 'makes history' by becoming town's first transgender cheerleader

Kayden was stunned when he first realised his growing belly was not the result of a lack of exercise, but a baby.

With a broad smile, the 29-year-old explains: “I never thought about getting pregnant. Because of the male hormones, I didn’t think it was a possibility. It was ­definitely a surprise.”

Kayden was going through the mastectomy – or “top surgery” as he calls it – when he became pregnant. Doctors said it was because he’d had to take a break from the hormones before the operation.

He says: “To have a mastectomy you have to be off hormones for six weeks.”

Surprise: Kayden Coleman thought his tummy was due to a lack of exercise

Kayden didn’t think that small span would put him at risk of getting pregnant. But a few months later he started to feel strange. “One day my back was killing me,” he says. “Elijah was going to give me a massage, so I lay on my front on the bed. It felt like there was a pillow under my stomach but there was no pillow.”

Read more : Transgender beauty queen hoping has Miss World Spain dreams dashed

Kayden thought he was just bloated. “I actually said, ‘I think I should go get a pregnancy test’. We were joking about it.”

A few minutes later, it dawned on Kayden that his “joke” might actually be serious. Nervously, they went out to get a pregnancy test. He says: “I took the test the same night. I felt nervous but excited. The results were conclusive but I still didn’t believe it.”

When he went to the doctors, Kayden found he was 21 weeks pregnant. “I was shocked. It took a while to process it. But I was also busy figuring out how we could make things work in such a short space of time.”

Still shell-shocked, the couple set about turning their flat in Philadelphia, Pennsylvania, USA, into a family home. And in July 2013, they got married .

There was a lot to take in – especially for Elijah’s friends and family, who did not know Kayden was transgender. Security guard Elijah says: “It was such a personal thing that I felt if Kayden wanted them to know he should tell them himself.

“But when we found out Kayden was pregnant we knew we had to tell them. How could we explain the baby when she popped up after a couple of months?”

Kayden was lucky that most people failed to notice his bump but he did get some confused looks. He says: “This woman in a shop said to me, ‘Honey, you look like you’re pregnant’. I just laughed and said, ‘I am pregnant!’ She didn’t believe me.” His pregnancy went smoothly but when it came to the birth in December 2013, it was a different story.

Gruelling: Kayden was in labour for four days and had to have a c-section

Kayden, who was in­­duced at nine months as he had high blood pressure , was in labour for four days.

Kayden did not face discrimination from hospital staff but did feel he was treated differently from other mums-to-be. “All the medical people were really nice but I did kind of feel like an experiment. While I was in labour, medical students kept coming in and out. It got to the point where I had to put my foot down and demand a c-section.”

When Kayden first saw his daughter he was still in shock. He says: “Even when I first held her it hadn’t sunk in that she was mine, so I didn’t really feel much. But I knew things would never be the same again. I was so happy to finally see her face.” But when they brought Azaelia home, both parents found family life challenging, with Kayden giving up his job in a museum to take care of their daughter and Elijah working 10 hours a day to support them.

And Kayden also suffered postnatal depression. Elijah says: “It was tough. Kayden had postnatal depression for about a year. I wasn’t around much and we don’t have family nearby, so it was really hard. People who say it’s a joy are either lying or they have a lot of help from family.”

The situation wasn’t helped by the fact that the couple had a rift with Elijah’s family after they first heard the news.

Elijah says: “It must have been difficult hearing that your son’s boyfriend was pregnant, I don’t deny that. But I felt like there were some unkind comments and I didn’t appreciate that.”

However the couple and their relatives got through the difficult times and now have a happy family unit as Azaelia starts toddling. Kayden says: “Now it feels great. I couldn’t imagine, and don’t want to imagine, life without her. She is amazing.

“She is an awesome kid. Very well-mannered. She’s very sensitive but also very much like both of us. Her favourite word is, ‘No!’

“I don’t feel like we should have been parents all along but I feel like we are great parents now.”

Born female: Kayden, pictured as a little girl, had been living as a man for years when he fell pregnant

It was a happy end for the couple after many years of strife for Kayden.

Growing up as a girl in a religious family in Florida, he always knew something was not quite right.

He says: “I just didn’t know what it was. I went through a lot of phases of trying to fit in and trying to figure out why I was so different. I have three older brothers. I always wanted to be around them and play sports and do the things that they did. I grew up in a very Christian, very Jamaican household and that type of stuff wasn’t acceptable. Girls had to act like girls and boys had to act like boys

“I convinced myself I was a lesbian because at least when I was doing that I could play a masculine role and it was more accepted.”

Kayden reached breaking point at 20 when he became depressed and suicidal. He started to do online research and, as he began to understand what it meant to be trans, everything fell into place. He started to wear a binder, which flattens the breasts, and began taking male hormones.

Meanwhile, Elijah had battled with his sexuality , coming out to his parents at home in New Jersey when he was 15. He recalls: “My mum had lots of gay friends. One of them mentioned that I might be gay to my mum and she confronted me about it.

“My dad struggled with it for a few years but I think on some level that my family had always known.”

Elijah and Kayden were introduced, through a mutual friend, on Twitter in 2012. For three months they messaged each other and spoke on Skype. Elijah says: “I didn’t know Kayden was trans when I started pursuing him but he told me during our very first conversation. I was fine with it. It didn’t make a difference to me.”

Eventually, the pair decided to meet up in New York City and immediately hit it off.

It was the following year that Kayden became pregnant. He is not the first man to have a child. That title went to Thomas Beatie, 34, a transgender man from Oregon, who, in 2008, announced he was expecting a baby with his wife Nancy, 45. He has since had three children.

Kayden is now planning a hysterectomy but he and Elijah could not be happier to have Azaelia in their lives.

They are raising her as two fathers – she calls Kayden “Daddy” and Elijah “Poppy” – and will tell the youngster the full story in another three years.

Kayden says: “Kids are a lot more ­understanding and receptive than adults. But I don’t plan on making a big deal out of it. I’ve never made a big deal out of it when telling anyone, because to me it’s not a big deal.

“As long as Azaelia is loved and cared for, I doubt she’ll care.”

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CEBID - Centro de Estudos em Biodireito