Baby girl survives with heart outside her body at birth, in UK first

Vanellope Hope Wilkins, who had her first surgery within an hour of delivery, is believed to be first baby in UK to survive with the extremely rare condition

A baby girl born with her heart outside her body is believed to be the first in the UK to survive with the extremely rare condition after undergoing three operations, the first within an hour of her birth.

At a nine-week scan, Vanellope Hope Wilkins was discovered to have the condition ectopia cordis, with her heart and part of her stomach growing externally.

Her parents, Naomi Findlay, 31, and Dean Wilkins, 43, of Bulwell, Nottinghamshire, were advised termination was the only option, they said.

But three weeks after her premature birth, by caesarean section on 22 November, Vanellope, who is named after a Disney princess, has survived three operations at Glenfield Hospital, Leicester, to move her heart back inside her chest.

Experts, including the consultant cardiologist, have said they do not know of another case in the UK where a baby has survived such a condition.

Describing their emotions on first being told of her chances, Findlay said: I burst into tears. When we did the research, we just couldnt physically look because the condition came with so many problems.

Wilkins said: We still didnt know what we were looking at when we saw the scan, it looked like a little hamster with a hat on.

They decided against termination, preferring to leave it to nature, and worried throughout the whole pregnancy.

Vanellope
Vanellope Wilkins undergoes corrective surgery, in what is believed to be a UK first, at Glenfield Hospital. Photograph: University Hospitals of Leiceste/PA

The couple said they were told the first 10 minutes after birth were crucial as her ability to breathe would be essential. But when she came out and she came out crying, that was it. The relief fell out of me, said her mother. Her father said: Twenty minutes went by and she was still shouting her head off it made us so joyful and teary.

Vanellope has undergone three operations carried out by a team of 50 staff at Glenfield Hospital. Immediately after her birth, she was wrapped in a sterile plastic bag. Consultant neonatologist Jonathan Cusack said: At around 50 minutes of age, it was felt that Vanellope was stable enough to be transferred back to the main theatre, where she had been born, to the waiting anaesthetists, congenital heart disease and paediatric surgical teams who began the task of putting her entire heart back inside her chest.

She was transferred to the paediatric intensive care unit where she was due to stay for at least several weeks while she got strong enough and big enough for her heart to be placed fully within her chest and covered with her skin.

After seven days, her chest was opened a bit more to create space to allow her heart to fit back in. In the average baby, there is an indent on the left lung which leaves space for the heart, but she did not have this. Over two weeks, her heart naturally made its way back into her chest as a result of gravity.

The latest operation involved taking skin from under her arms and moving it to join in the middle of her body. Surgeons had created a mesh that protected her heart as she did not have ribs or a sternum. As her organs fight for space inside her chest, she is still attached to a ventilation machine.

Babies born with the condition one estimate is five to eight per million have less than a 10% chance of survival.

Branko Mimic, the lead surgeon at the East Midlands Congenital Heart Centre, said: Cases such as Vanellopes, where everything else appears essentially normal, are even rarer, and whilst it would seem more hopeful she will do well, it is therefore almost impossible to be confident of this.

Frances BuLock, a consultant paediatric cardiologist at Glenfield Hospital, said she had described the chances of the baby surviving as remote. I had seen one in foetal life around 20 years ago but that pregnancy was ended.

Findlay said all the way through her pregnancy that she was warned the chances of survival are next to nothing. After the birth, she said, I felt guilty for thinking negative thoughts because here she is fighting, and there was I, about to give up. Im glad I stuck to my guns not to terminate though, Im so glad.

Wilkins said: I lost hope a few times, if she didnt move Id say: Has she moved today? and then, the next thing, shed suddenly move and youd go: Oh shes heard me.

They named their daughter after a character in the film Wreck-it Ralph. Vanellope in the film is so stubborn and she turns into a princess at the end, so it was so fitting. The Hope part of her name is the fact that she has brought us hope, and my mum and dad, because even they, as grandparents, thought they would never get to see their granddaughter, said Findlay.

Wilkins said: Some mums still terminate and if we can get out there that there is a hope, and that it can be done, then its giving all those mums out there a chance. His daughters name was a reminder, he said, that there is that hope.

Read more: https://www.theguardian.com/uk-news/2017/dec/12/baby-girl-survives-after-being-born-with-heart-outside-her-body-in-uk-first

Poor diet is a factor in one in five deaths, global disease study reveals

Study compiling data from every country finds people are living longer but millions are eating wrong foods for their health

Poor diet is a factor in one in five deaths around the world, according to the most comprehensive study ever carried out on the subject.

Millions of people are eating the wrong sorts of food for good health. Eating a diet that is low in whole grains, fruit, nuts and seeds and fish oils and high in salt raises the risk of an early death, according to the huge and ongoing study Global Burden of Disease.

The study, based at the Institute of Health Metrics and Evaluation at the University of Washington, compiles data from every country in the world and makes informed estimates where there are gaps. Five papers on life expectancy and the causes and risk factors of death and ill health have been published by the Lancet medical journal.

It finds that people are living longer. Life expectancy in 2016 worldwide was 75.3 years for women and 69.8 for men. Japan has the highest life expectancy at 84 years and the Central African Republic has the lowest at just over 50. In the UK, life expectancy for a man born in 2016 is 79, and for a woman 82.9.

Diet is the second highest risk factor for early death after smoking. Other high risks are high blood glucose which can lead to diabetes, high blood pressure, high body mass index (BMI) which is a measure of obesity, and high total cholesterol. All of these can be related to eating the wrong foods, although there are also other causes.

causes of death graphic

This is really large, Dr Christopher Murray, IHMEs director, told the Guardian. It is amongst the really big problems in the world. It is a cluster that is getting worse. While obesity gets attention, he was not sure policymakers were as focused on the area of diet and health as they needed to be. That constellation is a really, really big challenge for health and health systems, he said.

The problem is often seen as the spread of western diets, taking over from traditional foods in the developing world. But it is not that simple, says Murray. Take fruit. It has lots of health benefits but only very wealthy people eat a lot of fruit, with some exceptions.

Sugary drinks are harmful to health but eating a lot of red meat, the study finds, is not as big a risk to health as failing to eat whole grains. We need to look really carefully at what are the healthy compounds in diets that provide protection, he said.

undernourishment graphic

Prof John Newton, director of health improvement at Public Health England, said the studies show how quickly diet and obesity-related disease is spreading around the world. I dont think people realise how quickly the focus is shifting towards non-communicable disease [such as cancer, heart disease and stroke] and diseases that come with development, in particular related to poor diet. The numbers are quite shocking in my view, he said.

The UK tracks childhood obesity through the school measurement programme and has brought in measures to try to tackle it. But no country in the world has been able to solve the problem and it is a concern that we really need to think about tackling globally, he said.

Today, 72% of deaths are from non-communicable diseases for which obesity and diet are among the risk factors, with ischaemic heart disease as the leading cause worldwide of early deaths, including in the UK. Lung cancer, stroke, lung disease (chronic obstructive pulmonary disorder) and Alzheimers are the other main causes in the UK.

The success story is children under five. In 2016, for the first time in modern history, fewer than 5 million children under five died in one year a significant fall compared with 1990, when 11 million died. Increased education for women, less poverty, having fewer children, vaccinations, anti-malaria bed-nets, improved water and sanitation are among the changes in low-income countries that have brought the death rate down, thanks to development aid.

People are living longer but spending more years in ill health. Obesity is one of the major reasons. More than a billion people worldwide are living with mental health and substance misuse disorders. Depression features in the top 10 causes of ill health in all but four countries.

Our findings indicate people are living longer and, over the past decade, we identified substantial progress in driving down death rates from some of the worlds most pernicious diseases and conditions, such as under age-five mortality and malaria, said Murray Yet, despite this progress, we are facing a triad of trouble holding back many nations and communities obesity, conflict, and mental illness, including substance use disorders.

In the UK, the concern is particularly about the increase in ill-health that prevents people from working or having a fulfilling life, said Newton. A man in the UK born in 2016 can expect only 69 years in good health and a woman 71 years.

This is yet another reminder that while were living longer, much of that extra time is spent in ill-health. It underlines the importance of preventing the conditions that keep people out of work and put their long term health in jeopardy, like musculoskeletal problems, poor hearing and mental ill health. Our priority is to help people, including during the crucial early years of life and in middle age, to give them the best chance of a long and healthy later life, he said.

Read more: https://www.theguardian.com/society/2017/sep/14/poor-diet-is-a-factor-in-one-in-five-deaths-global-disease-study-reveals

Jimmy Kimmel delivers heart wrenching monologue about newborn son’s live-saving surgery

Jimmy Kimmel returned to television after a week off the air, and in aheartfeltand tear-filled monologue, shared the story of his sons birth and his life-threatening health scare.

Kimmel was close to tears before he started, so he assured viewers that this story had a happy ending. He and his wife Molly welcomed a boy, whom they named William (but that theyre calling Billy), and for the first few hours everything seemed OK. Once a nurse noticed that Billys face was purple, she alerted other doctors, who discovered that Billy had a congenital heart disease.

Billy was born with a blocked pulmonary valve and he has a hole in the wall between his left and right sides of his heart. He was transferred to Childrens Hospital Los Angeles, and at three days old, Billy underwent emergency open heart surgery to repair one of the holes. After, as Kimmel put it, the longest three hours of my life, the surgery was a complete success.

Hell have to have another open-heart surgery in 3-6 months to close those holes, but they want to wait until hes bigger, Kimmel said. And then hell have to have a third, hopefully noninvasive surgery when hes older.

Kimmel and his wife were able to take Billy home, where hes doing the things any baby would. Recognizing the platform he has, he thanked every single nurse and doctor at Cedars-Sinai and Childrens Hospital who helped save Billys life by name, thanked his friends and family who were nothing but supportive during this crisisyes, even Matt Damonand alerted his audience to the incredible work Childrens Hospital does for children and their families. He already donated to Children’s Hospital but didn’t think he would ever need to go there.

Toward the end Kimmel acknowledged the political fight over healthcare access after thanking his congressman for agreeing to increase funds for the National Institutes of Health (NIH) in the federal budget. Donald Trump wanted to cut NIH funds, which would affect places like Childrens Hospital. And until a few years ago, children like his son might have never had access to health insurance because they happened to be born with a preexisting condition like a congenital heart defect. Or, the child might not have lived long enough to be denied because their parents didnt have health insurance.

If your baby is going to die and it doesnt have to, it shouldnt matter how much money you make, he explained. I think thats something thatwhether youre a Republican or a Democrat or something elsewe all agree on that, right?

I saw a lot of families there, and no parent should ever have to decide if they can afford to save their childs life, he added. It just shouldnt happen. Not here.

Read more: https://www.dailydot.com/upstream/jimmy-kimmel-son-birth-health-scare/

Our twins were born two years apart

Although my children were conceived through IVF at the same time, the embryo that became my son was frozen for two years before being implanted. How will their birth order affect them?

Our son and daughter were conceived at the same time, while we were in the cafe at Ikea Croydon (a convenient place for brunch after an early-morning egg-retrieval operation). But while our fertility clinic implanted our little girl into my womb three days later, our little boy went into their freezer for two years. Now, she is five and he is three, but technically they are fraternal twins.

Felix first started to become aware of his unusual origins when he was about two, when we found some home video footage of his big sister at her first family Christmas. Watching her chuckling in glee while bouncing on Grannys knee, he pointed out our familiar red sofa and his older cousins laughing in the background, then asked: Where was I?

Well, that was before you were born.

But where was I?

Weve always been open about the medical intervention we needed to have our children. So we told him the truth, something along the lines of: When the doctors put tiny Miranda into Mummys tummy to grow into a baby, they put tiny Felix into a special freezer to wait until it was your turn. When that video was taken, you were waiting in the freezer.

We told him how special and amazing that was. And, in the usual way of toddlers presented with special and amazing things, he simply accepted it and asked to watch more videos.

Since that conversation, though, the realisation that he existed in suspended animation for two years while his sister was having fun, with Mum and Dad all to herself, has been a big thing for our little boy to get his head around. Some days, he is full of questions. Was it our freezer? he wants to know. What else was in the freezer with me? We have to explain that, no, he wasnt tucked away among the fertility doctors fish fingers and frozen peas. What did I look like? he asks. I suspect he is imagining some sort of miniature baby-shaped ice cube.

You were just a blob, his dad explains. We find some pictures online to show him. He was frozen five days after conception, as a blastocyst, a ball of 200 or so cells, the inner mass of which would become the embryonic Felix, the outer shell his placenta.

I was a blob! he repeats, sounding excited and reassured. Did I feel cold? Did I have eyes?

Recently, he has wanted to know: How did I get into your tummy? and: How did I get out again? His solemn assessment of the answers to these questions has been priceless. But there is one question he hasnt yet asked: Why me?

Surely, one day he will wonder why his sister was born first and he had to wait. When the question comes, will we tell him the truth? That his irregular and fragmented cells meant he was classified as an inferior-quality pre-embryo? That the pair given the top two gradings (out of the four used in IVF treatment) were placed together in my body first? That if they had grown into twins, instead of one disappearing as the other developed into our daughter, his fate might have been very different?

Cuddling his robust little body, admiring his ceaseless curiosity, helping him enrol Darth Vader into his sisters make-believe school of cuddly cats, it is difficult to imagine the alternatives.

Practically and financially, a third baby wasnt on the cards. Would we have offered him to medical researchers? Donated him to an infertile couple? Would anyone have wanted the runt of our pre-embryonic litter? Would he still be there, frozen expensively in time, like an estimated two million other frosties worldwide?

As much as I am thankful to medical science for enabling us to have our family, I am relieved we didnt have to make such an agonising decision. The alternatives are all the more heart-rending now we know that minuscule ball of cells, just 0.2mm in diameter, as a bouncy, impossibly stubborn, brown-eyed boy who adores superheroes, trumpets and all things yellow.

Every day, I watch him copying his sisters drawings and dancing, joining in her games of princesses and picnics, and wonder how their characters have been shaped by a very 21st-century twist of fate. How different would our children be if he had been born first and she had spent two years in the freezer or if they had been identical twins? How will their beginnings affect them as they grow up?

The differences arent just environmental, but biological, too. While IVF babies are generally a little smaller than average at birth, those frozen as pre-embryos tend to be heavier. Our family bears this out.

Despite being classed as inferior on day five of their existence, our son weighed 2lb (0.9kg) more than our daughter at birth she was just under 7lb, he was just under 9lb. His delivery was easier and he fed better, grew faster and slept for longer. While he was a bump, I worried constantly that this low-grade creature from the freezer couldnt possibly be normal. In fact, he couldnt have been more perfect.

Surprisingly, freezing is associated with better outcomes for babies and their mums than IVF with freshly fertilised eggs. Defrosted embryos have a lower risk of premature birth and perinatal death, as well as the all-important heavier birthweight associated with better academic performance and protection from conditions such as coronary heart disease, diabetes and stroke.

Perhaps it was Miranda, transplanted into a body battered by the surgeries, stresses and hormonal excesses of fertility treatment, who had a tougher time post-conception. But then, as our eldest child, she benefited from our undivided attention for the first two years of her life. Firstborn girls tend to do better educationally and have higher aspirations than their siblings.

It seems the hand that reproductive science has dealt our children may have slight benefits for both of them. (Note to self: remember these for when the Why me? question crops up.)

As for personality, our kids place in the family might not be as character-forming as we might think. In 2015, a major multinational study found no birth-order effects on extraversion, emotional stability, agreeableness, conscientiousness or imagination. Meanwhile, researchers studying 377,000 US teenagers concluded that birth order has an infinitesimally small effect on personality.

I am sure there will be times when they envy one anothers position in the family (is there anyone with a sibling who hasnt occasionally wished they could swap places?), but for now Miranda and Felix seem content in their roles as big sister and little brother. And, if resentment rears its ugly head, I will tell them that the important thing is not who was born first, but that they were born at all.

We chose the name Felix because it means lucky: lucky to have been our sole pre-embryo to make it to the blastocyst stage in vitro; lucky to have survived freezing to -196C and thawing without being damaged by intracellular ice crystals; lucky to have implanted successfully and grown healthily in the womb.

Some evenings, after I kiss him goodnight, he snuggles up to me and says: Tell me the story of how I came in our family. Every time I do, I remind myself that, after so many years of thinking we would never have children, to be wondering about the impact of their birth order is a wonder in itself.

@ElyssaCB

Choosing Childcare by Elyssa Campbell-Barr is published by Cross Publishing, 9.99. To order a copy for 8.49, go to bookshop.theguardian.com or call the Guardian Bookshop on 0330 333 6846

Read more: https://www.theguardian.com/lifeandstyle/2017/apr/29/our-twins-were-born-two-years-apart

British Heart Foundation – The Small Creature, an animated story to help bereaved children

When young children lose someone close to them, it can be so difficult to tell how they are dealing with that loss, and help them through any feelings they might be having.

This is where Small Creature can help. He loses his best friend, Bird, and finds himself experiencing all sorts of feelings as he tries to deal with her loss.

The friends he encounters along the way give him little ways to deal with those feelings and let him know that help is at hand.

British Heart Foundation – How does a healthy heart work?

Part of the BHF DVD – Children with Congenital Heart Disease.

British Heart Foundation – Wear It.Beat It. TV Advert

In February, join the nation in wearing red to raise valuable money in the Fight for Every Heartbeat. We fund research projects that saves lives.

For a free fundraising kit visit