Thirty years ago, a shortage of nurses led Shani Miara to be placed temporarily at Herzog Medical Center in Jerusalem. What started as a temporary position became permanent and since 2012, Shani has been the head nurse of the Infant and Child Respiratory Care Department. “These are chronic patients who need ventilation 24/7, the Department is their home.”
Shani Miara, Head Nurse of the Infant and Child Respiratory Care Department at Herzog Hospital, Jerusalem
Shani Miara, 49, is the head nurse in the Infant and Child Respiratory Care Department at Herzog Medical Center in Jerusalem.
How did you get into the role?
Shani Miara: “I’ve been a nurse for almost 30 years, I started at a very young age. I completed my nursing studies at Bikur Holim Hospital in Jerusalem. At the time, there weren’t enough nurses, so they told me, ‘Go work at Herzog Medical Center for a year.’ I had a good time and have been here ever since. I started out as an ordinary nurse, and while working I also completed a master’s degree in Health Administration and a degree in Public Health. I advanced to the position of head nurse in a rehabilitation department, and then worked as a nurse in the Skilled Nursing Department. Since 2012, I have been the head nurse of the Infant and Child Respiratory Care Department, which opened in 2004.”
Shani Miara, head nurse at the Infant and Child Respiratory Care Department at Herzog Medical Center. "We know the nuances of each child…"
The Infant and Child Respiratory Care Department at Herzog Medical Center, Jerusalem. "There is a lot of communication with the help of screens.
צילום: אוליבייה פיטוסי
They come to us in a variety of different circumstances. It can be the result of domestic accidents, like drowning or suffocation; genetic defect due to marriage of relatives; and problems before and during childbirth. There are also children who are hospitalized with us because of complicated surgeries.”
Shani Miara, Head Nurse in the Infant and Child Respiratory Care Department at Herzog Medical Center
Who are the department’s patients?
“This is a department that treats children who are chronically ventilated, ranging from babies as young as a few months old to the age of 18. Most of them come to us straight from the pediatric intensive care unit, and they are not suitable for a rehabilitation institution. We are called a chronic institution, but in practice we provide all the rehabilitative tools. Children come to us from all over the country, in various medical and conscious conditions. They are on permanent ventilation and require 24/7 nursing care. This department is their home.”
Under what circumstances do the children come to you?
“It can be the result of domestic accidents, like drowning or suffocation; Sometimes these become different genetic diseases, whether it is due to abnormal implantation of the fetus in the uterus, or a genetic defect due to marriage of relatives; Sometimes it is due to problems before and during birth, such as uterine rupture, placental abruption or lack of oxygen supply to the fetus. That’s why actual babies come to us, a few months old. There are also cases of children who are hospitalized with us because of complicated surgeries. For example, a child who went into heart surgery and was supposed to come out and get well, but the operation got complicated.”
We have a school in the department, but these are not studies like for healthy or mildly impaired children. Some have an alternative means of communication, with a computer. With some children, communication is through the eyes, and some children are able to use the computer on their own.”
What does the department look like? How many patients do you have?
“This is the largest ventilated pediatric department in Israel, and probably in the world as well. We have 28 patients, living two in a room. We also recently moved into a new building. The department includes a medical team of doctors, female nurses and male nurses, a social worker, a paramedical occupational therapy team, an auxiliary force and an educational team for what is called the Herzog School, which has been operating in the department for 12 years. The shifts, as in any hospital, are divided into morning, evening and night shifts. The physical environment of the department is colorful, full of dolls, paintings, and there are screens and music in the background.”
What does it mean, a school in the Infant and Child Respiratory Care Department? How well do they really function?
“The children in our care suffer from injuries on a wide spectrum. There are those with very severe injury and there are those who are high functioning. Usually, their condition also has a cognitive component that prevents them from functioning like a normal child. Sometimes it comes along with neurological damage manifested by muscle laxity, for example, or with rare genetic syndromes.
“Our school is a special education school, depending on the child’s situation. These are not studies like in healthy children or children with mild disabilities. Many of them have an alternative means of communication, with a computer. With some children, communication is through the eyes, and some children are able to use the computer on their own to communicate or find movies and pictures. We have a lot of sensory stimulation activities: a darkroom, a room with lighting and music, and there is also a cooking class. The teachers have undergone special training, and we all work together with them and the children.”
Shani Miara. "They say you shouldn't take work home, but you can't do it any other way."
Shani Miara. "As a child, my dream was to be a nurse…"
What communication does the ward staff have with the children?
“First of all, there are constant stimuli in the background. TV, music, radio. We talk to them all the time, to everyone. We have a rule, every morning to come in and say good morning, talk to anyone, turn on the lights.”
And is there a response?
“A smile, a look, sometimes a movement of the hand or just seeing on the monitor that their heart rate is rising. Most of them we have known for a long time and recognize the nuances in each child, when he is in pain, when he is uncomfortable, when he wants to sleep. Our patients are completely dependent on their staff, but they get everything healthy children get, from vaccinations to parties and birthdays. On Purim, for example, we have a party with the parents, the children are dressed up and go outside with them.”
Nonetheless, these are difficult cases. Are there bright spots, success stories?
“It is difficult, if not impossible, to take care of children in such a situation at home. We’ve had a few cases where we’ve managed to get some kids home, on ventilators. But that means being around the child for 24 hours and setting up a kind of small hospital at home. Most often, these are young parents who also work and raise more siblings.
“But there are also successes: for example, last year we had two children, one was injured by drowning and another was injured in an accident. We managed to send them both to rehabilitation hospitals; and there were three other children who went back to live at home, on ventilators.”
We have families who had a very hard time accepting what happened to the child or even telling other children in the family about it. Through a lot of conversations, I managed to get the family closer to the child who was hospitalized, to encourage the older and younger siblings to come visit.”
What contact does the staff have with the patients’ families?
“We have a close relationship with all the parents. It’s a complex coping. Some families had a hard time accepting what happened to their child or even telling other children in the family about it. I have a close relationship with the mothers, and I succeeded, through a lot of conversations and encouragement, in getting the family closer to the child in our hospital, encouraging the older and younger siblings to come visit as well. In some families, the child on a ventilator is the eldest – and so his younger siblings have known him since they were born.
“We also try to make wishes come true. For example, taking three children to the Western Wall for their bar mitzvah – and helping another girl celebrate her sister’s bat mitzvah. It’s so exciting.”
Your work introduces you to many tragedies. How do you feel about her?
“As a child, my dream was to be a nurse. When I was in fourth grade, I sent a letter to ‘This Is It’ (a famous TV show in Israel) and told them about my wish. They didn’t get back to me – but I became a nurse anyway. I really love the job.”
“It’s a difficult and an abrasive profession, and every time something happens to a child in our care or a child dies, we take it personally. They say you shouldn’t take work home, but in my profession it’s impossible. The children and families come to me even in dreams. I am there for them and I come to the department every morning with joy, with a smile and positive energy – and work together with staff from all sectors, ethnicities and all ages.”