Shortly after birth, as they had just know, with eve, was the mother of Eva’s bed, watching the tiny people and the thick tube of the breathing machine, and thought, like Frankenstein. A body that is awakened through a machine for life.
a healthy heart beat in the small body, new synapses formed in the brain, Eva struck out with the leg, if she was awake. Only their breathing, which was as soon as Eva slept. And a Baby sleeps a lot.
Of the 180,000 children
Five years later, Eva has just celebrated her birthday. She climbs from the tree house, romps through the garden, way down in front of the big sister Esther. Hair flying, eyes Shine, she laughs. The cannula in their neck, not notice initially. This is hardly something more important than this little tube of plastic, five inches long, it is eve’s connection to life and the only always visible signs for the disease. The other characters are more subtle. When Eva falls asleep, if she is sick, in pain, or if your circuit is heavily loaded, it stops to breathe. At any time your heart can stand, forget it dig in. Also Hunger and thirst you don’t feel like other. All of our body, the autonomic nervous system is controlled by an indispensable part.
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Eva loves Jumping, Hopping, Climbing. If she is tall, she wants to be a Rider. No one looks at her, that she is severely disabled.
©Joanna Nottebrock/star
All of these are symptoms of this disease: Congenital Central hypoventilation syndrome, or CCH. Some use a different term that sounds like a term of endearment: Undine’s syndrome, named after a mythical mermaid who cursed her unfaithful husband to suffocate, as soon as he fell asleep. Eve’s mother Andrea Bornemann-goehre called the disease prefer to CCH, this sounds less and less fairy tale and more for what it is. Inexplicable and deadly. We know little about CCH. Only so much: A genetic defect has disturbed the development of the nervous system, as Eva was still an Embryo, especially those receptors that measure the carbon dioxide content in the blood and the respiratory center report that the body has to get air. When Eva sleeps, there is no response to this message. Of a of 180,000 children will be born as Eva. But their story is not only a sick girl. It is the story of a family with a child who looks healthy, and at any time could die.
The star supported the request of the family after a Dolphin therapy for Eva.
The Foundation’s star forwards your donation to the organization Dolphin Aid.
Here you can donate:
Foundation star – IBAN DE20 2007 0000 0469 9500 01 – BIC DEUTDEHH – keyword “Dolphin therapy”; www.stiftungstern.de
What is the worst thing about CCH is that?
Andrea, 47: “That one is powerless. Delivered.”
father Landolf, 51: “it is at the child nothing. But if it falls asleep on your Arm and not immediately is ventilated, you have a dead child in your arms.”
ventilator next to the bed
On the window Board in Eva’s room suction tubing, spare needles and shells from the island of Sylt. On the shelf next to your bed the machine: a CO2 measuring device, a humidifier for the air, which is pressed into eve’s lungs, and a ventilator, the values and the wavy lines flicker. The line that shows every breath, is green, Eva is still awake and breathing. As soon as the machine is yellow, the line.
father Landolf Bornemann bends over to Eva, telling her coping the story from Spiderman, with spider webs of red riding hood before the Wolf rescues.
In a corner next to the merchant’s shop, and children’s books to the Desk where a nurse about Eva’s sleep is waking up. It is the folder with the ventilation protocols and the bottles with food, 1560 milliliters. The drink Eva at night, because she eats during the day.
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Andrea Bornemann-goehre of the Doctors heard the diagnosis, she cried. And then thought: “moving on”.
©Joanna Nottebrock/star
Eva falls asleep. Now it needs to go quickly, the CO2-value rises. The nurse adjusted ventilator pressure and frequency, rotate the child, stuffs the pillow up from the Interaction of values and the Position of the small body, the perfect ventilation is achieved. Throughout the night, it fits the values and position of the body. Too much CO2 or too little oxygen in the blood mean brain damage, developmental delay, intellectual disability.
It will take several weeks until a new nurse, eve’s breathing completely dominated. The machines and who supports you to decide whether Eva is alive the next Morning. If she wakes up damage without a brain. Since five years ago.
“it is what It is.”
Landolf: “The nursing staff is a great help. But the privacy we have since then hardly still. Once out of the shower naked not jump, marital dispute, we move to the weekend, if no nurses are there.”
On the 26. In September 2013, Eva was 14 days old, sat Andrea and Landolf in the Medical University of Hannover on a blue Sofa, as her world sank. “It is CCH,” said the Doctor. What this means, had you read, the suspicion of stock for two weeks. “That was it”, you thought. A life with a ventilated child, how is this going to go? A child should never be alone, because it could die at any time. Tomorrow, in a year, in ten or in fifty. Like so many mothers of a sick child, Andrea conducted research according to their own debt. But there was nothing. It was a spontaneous Mutation. A dirty trick of fate.
Andrea: “Howl. Shake. More.”
Landolf: “I just thought: it is what It is.”
It is the only Time that Andrea sees him cry.
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The parents Landolf and Andrea Esther (R) and Eva. The family will celebrate eve’s fifth birthday at the Zoo.
©Joanna Nottebrock/star
Then Esther from the school had to be picked up. One of them had to Eva. So began what has since ceased to be: they worked. Care bed request, ventilators get, care service, select a new apartment because the old one was too small for two children, medical bed and equipment and nursing staff.
When Eva was a month old, cut a surgeon a tiny hole in her neck and put a connection between the lungs and the outside world. Eva was breathing now through the cannula. For their parents, this meant: her Baby Tempobet cried no longer, not chuckled with happiness, because no more air through the vocal cords urge.
sweet butterflies
With four months of the Eva was released. The struggles continued: the recognition of than Schwerbehinderte. Therefore, even in the hospital, the CO2 value is measured and ventilation adjusted. And again and again to the nurses, the Eva’s illness seriously.
Eva: “Who are you?”
Andrea: “Who am I? I forgot.”
Eva: “My mom!”
Andrea: “Yeah! I may be your Mama.”
Eva: “But do not forget!”
Andrea: “Never.”
After meeting Andrea and Landolf six years ago, it went fast: a room for Andreas daughter, Esther, then the first common child. The Landolf and he can have a Happy ending after two failed relationships before. A man like a Teddy bear, Esther “Papi” is called, the hours of telling stories and of the Eva on a father’s day greeting is: “My dad is so sweet like butterflies.”
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eve’s sleep is monitored by a nurse or the parents.
©Joanna Nottebrock/star
For five years, you are eve’s parents, they are a Team. Only a Couple of you are. At six o’clock the alarm clock, get up, Breakfast rings with Andrea, the Great awakening, the back to help the nurse with the Small, 47 kilometres to work as an occupational therapist, at noon, 47 kilometers, the nurse detachment. Household, house tasks, shopping, Eva’s singing group, Esther riding, therapy, or a sibling group. 20 am, the night nurse comes. After that, homework, and exclusive time for Esther. Landolf is as an event technician on the road a lot. Together, they are assumed to be in this year.
Andrea: “There are many problems between us, but where there is never a Problem, that is the supply of Eva. Since we think alike, because we are one.” Landolf: “This is my daughter, and you should just have a nice life. If it means more effort, it means more expenses.”
depression
In the middle of the living room there is a wooden horse, a small girls dream of white picket, pink Bridle, height of 1.50 meters. Eva climbs up. You would like to be a Rider. On the Sofa doll Kaleb is a doll bed. Like Eva, he wears a Band around the neck and a cannula. Doll Jana has no cannula, “which is like dad,” explains Eva. Your cannula during the day is covered with a cap. Then Eva breathed in through the nose and mouth, and you can talk. In the living room photos, Eva as a small child on a climbing frame, Eva and Esther on the beach. Marvin, Andreas adult son, while on holiday in Kenya. On a picture of Eva wearing a cloth around the neck, covering the cannula. As a nurse, Eva photographed so was Andrea: The cannula is one of Eva, which you do not need to hide. Just as vehemently, she says “severely disabled” instead of “affected” so that everyone understands that this cheerful girl who can already read and is so fond of riding, is very sick.
The oldest Undine patients are around 30, because earlier the children died. Eve’s life expectancy is normal if nothing goes wrong. For Andrea and Landolf are to much. If Eva wants to later on a Party, Andrea device with the breathing outside in the car waiting. If Eva wants to have children, then Andrea will Wake up on their beds. The risk that your daughter inherited the gene defect is 50 percent.
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Around the clock, eve’s breathing is monitored.
©Joanna Nottebrock/star
While Eva in the living room, where Andrea has a view, sits her sister Esther in her room and watching music videos. She is eleven years old, sixth grade, high school, you want to be a nurse. When Andrea was pregnant, has cuddled up to Esther on her belly.
Since eve in the world, everything is different. Also Esther. She was just come to the first class. Then, the moving, the changing schools, the sick sister, and the nurses came.
The star supported the request of the family after a Dolphin therapy for Eva.
The Foundation’s star forwards your donation to the organization Dolphin Aid.
Here you can donate:
Foundation star – IBAN DE20 2007 0000 0469 9500 01 – BIC DEUTDEHH – keyword “Dolphin therapy”; www.stiftungstern.de
Esther has depression, no friends and a school escort. You often have abdominal pain, although it hurts the soul. Until a few weeks ago she slept with her parents in the bed. The child must sleep alone, said a therapist. “Yeah, and?”, has Andrea answered, “the other child also needs to breathe, and doeth it not.”
the Best sister in the world
two years Ago, woke up to Esther in the morning, because the nurse in a panic, Eva’s name screamed, an epileptic seizure, the only one so far. “To call the ambulance,” cried Landolf Esther. She was in the children the fire brigade, 112, W-questions, the knew you. After the call she sat on the road and cried until the ambulance came.
Sometimes Esther is jealous. The parents have little time for you. Often you sit on your bed, watching Youtube Videos, or kneads slime to Play with Shampoo and paste.
Andrea: “I wish that Esther can say: This is all shit here, it makes me sick.”
Esther: “I just wish that Eva would be normal. But as it is, it is also the best sister in the world.”
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the devices Show high CO2 values in the blood or too little oxygen, must be adapted to the machine. Otherwise the brain damage.
©Joanna Nottebrock/star
For the other is the life of born’s bearable: you see Eva, who rages through the garden, and with Esther over the turf rolls. You see the nurses that come every day, the minibus by the taxi company, the Eva office nurse goes to the Kindergarten, the household help. You don’t see: the parents, the share after a day’s work the night shift because of the night service has been cancelled. The Taxi, pulls in suddenly to the right, tailgate, ventilator out, because Eva was unconscious. The mother, who can barely take a shower because you must have Eva in view, if the father only comes at night from work. The sister, who can concentrate in school because she thinks of Eva.
solidarity
This life-many do not understand. And so Andrea experienced situations, in the burn-in. The disparaging glances of the passers-by, if Eva ventilated in the Buggy. And worse: When Eva was a Baby, and rang a neighbor, you knew that already. He said: “Leave the sleep easy without the machine, then it’s over.”
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Esther says: “I wish that Eva would be quite normal. But as it is, it is also the best sister in the world.”
©Joanna Nottebrock/star
The clerk at the employment office, she wanted a Job, despite the case of a disabled child to speak, asked: “What is the child?” And then: “Well, breathe something everyone can do.”
Andrea: “Then I’ll close the door and cry.”
Landolf: “You have to swallow many things down, you would say, this is not really look down their throats.”
cure for Eva and her family. Relief, at least sometimes.
Four Times in the year you are going to a children’s hospice. There, Andrea and Landolf have more time for Esther and a little time. But what is the for a vacation in a place where other children go to Die?
the dolphins were there. A device for Dolphin therapy in Curacao was, unlike the German health clinics – ready, Eva. For two years, Andrea asked for donations, the health insurance Fund pays such therapies. In the spring they flew for two weeks in the Caribbean.
On the beach palm trees were. But much more important: For meals and accommodation was taken care of, not only Eva therapy got, even Esther. And then a miracle, the tears of Andrea is still in the eye happened, this Time in front of luck: Dolphin lady Chabelita kissed Eva on the cheek. Eva, who had barely out of the womb, the hands of strangers, and devices in the face, was able to endure touches and kisses in the face. Since the dolphins from the parents, and Esther kiss, from the nurse to wash the face, not squirming, when someone in the face has to handle close to. Andrea and Landolf collect donations, to be able to sometime in the future for the dolphins.
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your parents will want to that Eva can play like other children. For emergencies keep the ventilator ready.
©Joanna Nottebrock/star
Andrea: “of course, the cost. But I’ve learned in therapy, we are a community of solidarity.”
Landolf: “Eva is a million-Dollar-Baby. But it is worth it.”
birthday
Two days after eve’s fifth birthday: It’s in the Zoo. Ramp out of rehab-Buggy in, the ventilator and the tubing. “Are you tired? Should I connect you?”, Andrea asks. Eva shakes her head.
Landolf pushes the Buggy with the ventilator and the emergency bag by the Zoo. Eva caresses a ball Python, dangling upside-down from dad’s shoulder, balancing on a rope, slips, plops in the Sand. Landolf helps her up, sends it to the hanging ladder. You should play like other children.
There, in the Zoo, they celebrated eve’s birthday. But actually, they celebrate every day that Eva has survived a night.