Monday, May 14, 2012

Bee BUZZ: In the News



We first shared about sweet little Natan Shai in our Bee-ography series in August 2011, read his story HERE if you missed it.


Back in January 2012, his amazing mother Hannah shared his story in the largest Jewish magazine in the world, Mishpacha Jewish Family First, which reached over 250,000 individuals across the globe. First, here is a brief synopsis of the interview with the article's author Shira Yehudit Djlilmand:


A Beautiful Gift
Shira Yehudit Djlilmand | Wednesday, January 25, 2012

When Hannah Levi first told me about her foster son, Natan Shai, she emailed me the following: “He is now four and has an acute awareness of his family and surroundings, and his smile is simply a ray of sunshine that can warm the coldest heart. He walks in his ‘Hart Walker,’ makes sounds, laughs, and can say ‘Amen’ (this is his only word!). And all this without a brain!”

She didn’t emphasize all the things he couldn’t do — and will probably never do. She focused on his successes, and most of all, his wonderful smile. This is something, she told me, all children with hydranencephaly have.

And so when I went to visit Natan Shai at his home, despite being a little apprehensive of what I should say to a child with almost no brain, I was expecting the smile.

I wasn’t disappointed.

As soon as I walked through the door, I was greeted by a smile that took up Natan Shai’s entire face. And throughout the visit, the smile was often seen, along with delicious giggles that convinced me that what Hannah had claimed was true — that Natan Shai, despite all of his mental and physical disabilities, enjoys life.

“This kid,” Hannah says, “has so many problems, but he has a light in his eyes that tells me he wants to live forever.”


Below find the rest of the article as shared with me from Hannah, and transposed from pdf file with permission to publish here on our blog. Originally in print the week of January 18, 2012 in the Family Feature section of Family First, pages 27-31.

For children born with hydranencephaly, a rare condition in which all or much of the brain is missing, the prognosis is usually gloomy–death by age one. but then there are children like 4-year-old Natan Shai, who are beating all the odds and bringing great joy to their Families. 


When Hannah Levi first told me about her foster son Natan Shai, she emailed me the following: “He is now four and has an acute awareness of his family and surroundings, and his smile is simply a ray of sunshine that can warm the coldest heart. He walks in his 
‘Hart Walker,’ makes sounds, laughs, and can say ‘Amen’ (this is his only word!) And all this without a brain!” 


She didn’t emphasize all the things he couldn’t do — and will probably never do. She focused on his successes, and most of all, his wonderful smile. This is something, she told me, all children with hydranencephaly have. 


And so when I went to visit Natan Shai at his home, despite being a little apprehensive of what I should say to a child with almost no brain, I was expecting the smile. 


I wasn’t disappointed. 


As soon as I walked through the door, I was greeted by a smile that took up Natan Shai’s entire face. And throughout the visit, the smile was often seen, along with delicious giggles that convinced me that what Hannah had claimed was true — that Natan Shai, despite all of his mental and physical disabilities, enjoys life. 


“This kid,” Hannah says, “has so many problems, but he has a light in his eyes that tells me he wants to live forever.” 


Receiving the Gift


Natan Shai arrived in the Levi home as a much-awaited gift, after the family had been waiting many years to foster a special-needs child. 


“We first wanted to be a foster family 15 years ago, when we had just 2 small children,” Hannah says. “And we wanted a special-needs child. We were neighbors of the Ben Baruch family (a Tzfas family that has fostered a number of special-needs children and has been featured in Family First – ed) and were very inspired by their example. Also my mother worked with autistic children in a boarding school and often brought them home on weekends so I got a good understanding of special-needs children. 


“We took the course for potential foster families, but then our rav told it wasn’t the right time to foster, so we waited. We had more children. When we had five children and our youngest was four, we asked our rav again, and this time he gave us a blessing to go ahead. We had a few offers but they didn’t work out. Fostering a child is just like making a shidduch – it’s not like going to a supermarket and picking a child off the shelf.” 


Over a year later, the Levis got a call from a social worker. 


“She told us they had a baby who’d been abandoned at birth. He looked normal, they told us, but they knew from postnatal ultrasounds that he was brain damaged. No one ever mentioned the word ‘hydranencephaly’ to us.” 


Natan Shai was born at 23 weeks, weighing just 900 grams. He’d been in an incubator for three months when the Levis got the social worker’s phone call. 


“The hospital had little hope for him, although they did everything they could to keep him alive. The doctor said something about hydrocephalus [a different condition in which the brain fills up with fluid, often confused with hydranencephaly— ed.] but nothing about a prognosis. And to be honest, we were so euphoric at that point we didn’t really think about the future. We just loved him. He looked completely normal, except that his head was oversized and his eyes went off to the side a bit. We had no idea how serious his condition was. 


Hashem must have arranged it that way because He wanted us to fall in love with him before we found out.” 


In just three days, Natan Shai was part of the Levi family. 


“We heard about him Monday, went to see him Tuesday, fell in love with him on the spot, and took him home Wednesday.” 


The Levi children were thrilled; they’d all been asked if they were willing to accept a special-needs foster child, and were excited at the opportunity. He was given a bris and named Natan Shai, which means ‘give a beautiful gift.’ Just a week later, he was taken for a shunt operation, in which a tube is inserted to drain the fluid from the brain into the stomach. The operation went smoothly and dramatically reduced the size of Natan Shai’s enlarged head. He came home three days after the operation. But a few days after that, he became ill. 


“He was throwing up, had a high temperature, and seemed really sick, so we took him straight to the Rambam hospital emergency room; we thought the shunt might be blocked. But it turned out he had streptococcus in his blood, a dangerous condition probably contracted during his operation. He was in the hospital for a month, which, although it was very difficult for us, was a special time of bonding. But it was only then that we found out his real condition. 


“‘Don’t you realize what you’ve taken on?’ the doctor there asked us. "This baby won't live more than a year."


‘This kid has so many problems, but he has a light in his eyes that tells me he wants to live Forever” 


“We were in shock. Only then did I look closely at all his papers, in technical Hebrew, of course, and saw the word ‘hydranencephaly.’ Then I looked it up online. I sat in front of the computer and cried. 


“I wasn’t crying for me, I was crying for him, realizing he was going to be 100% disabled. One of the first things I did after that was get in touch with a support group for parents. I heard from the group that lots of parents are told terrible things by doctors but reality often wasn’t as gloomy as their predictions. I found out that there are children with hydranencephaly still very much alive even at age 22. That gave me hope.” 


Seizures and Smiles


A CT scan established that over half of Natan Shai’s brain was missing. Some children with hydranencephaly have no brain at all but only the brain stem. How such a child functions, both physically and mentally, varies greatly and it is still not fully understood how the brain stem takes over some functions of the absent part of the brain. 


Natan Shai, like most children with hydranencephaly, suffers from cerebral palsy, a condition which causes his muscles either to freeze up or to collapse so he has no control over them. 


And like most hydranencephalous children, he’s prone to pneumonia — the leading cause of death for these children — and has been hospitalized for pneumonia a number of times. He also suffers from seizures, now mostly under control with a medication used to treat epilepsy. 


Natan Shai has great physical disabilities. He’s about the size of a two year old, and although he can take steps in his special Hart Walker, which supports his entire body, physical actions apart from that are difficult. He tries to feed himself but often as not 
the spoon falls out of his hand; but his attempts demonstrate his indomitable willpower. 


What’s incredible is how Natan Shai interacts with the people around him. “He can make sounds,” Hannah tells me. “The only word he can say is ‘Amen’ but he says it totally clearly, maybe because he hears us all saying it out loud. He understands language – 
they said he’d be like a vegetable, but I think he understands everything." 


“He knows exactly how to grab attention too. He talks with his eyes and his smile… he can say anything with his eyes! For example, he adores my husband and always wants to sit on his lap, so when my husband comes home, Natan Shai starts giving him that special smile that clearly means ‘Pick me up!’” 


I saw this in action myself when I visited Natan Shai. When his father came home, Natan Shai’s eyes never left him, and once he was sitting happily snuggled up beside him, his smile never left his face, except when his older sister got a hug from her father and Natan 
Shai showed his disapproval strongly by making a lot of noise. 


“He’s very spoiled,” Hannah admits. “We all spoil him, and he objects if the other kids get attention; he thinks he should get it all! But he never shows anger; he has such a pure soul. He’s always happy and giggling. He does cry from no one but hashem knows how long Natan Shai will live, but if love has any influence, his life will be long."

Information on Hydranencephaly obtained from NINDS; National Organization 
for Rare Disorders; and the Brayden Alexander Global Foundation for Hydranencephaly 


Although Hannah never let one word of complaint pass her lips, looking after Natan Shai cannot be easy. “Since I got him, I haven’t slept through a single night. I wake up at 
least four times a night — sometimes he has cramps, sometimes he wants a drink. Sometimes I don’t know what he needs so I just sit with him or walk around.” 


In astonishment and shock, I ask Hannah how on earth she manages to function during the day. “Hashem gives extra strength, and I function fine. I could give Natan Shai sleeping 
medication but he’s already on so much medication already I don’t want to give him more if I don’t have to.” 


Hannah and her family are actually coping so well that only a year after Natan Shai came into their lives, they fostered yet another brain–damaged baby, who is still with them. 


looking to the future 


With such a level of brain damage, where in fact the brain isn’t actually damaged but simply non-existent, one might think that it is impossible for a child with hydranencephaly to develop either physically or mentally. But that’s just not true, claims 
Hannah. 


“Natan Shai has slowly, but surely, developed over time. His understanding of language has definitely developed. For example, if we say the name of one of the other children, 
he’ll look at that child. If we say ‘aquarium,’ he looks over at the fish. He’s also developed a great emotional awareness; if one of the other children is crying, Natan Shai feels his pain and cries right along with him. He is all light, totally light.” 


The Levis hope that Natan Shai will develop further in the future. He attends Rechisim, a totally chareidi school in Haifa for severely brain-damaged children from age 4 to 21. Natan Shai is kept active all day with occupational therapy, physiotherapy, music therapy, animal therapy, and activities related to the Yamim Tovim, etc. He comes home 
with a book describing what he did that day, and when Hannah reads it through with him, it’s clear from his smiles and giggles that he has a great time there. The mentality there is: “There’s no such thing as ‘can’t improve.’” 


“They hope to teach Natan Shai how to speak by using his eyes,” 


Hannah tells me excitedly, “and I think he can do it.” 


Having a brother like Natan Shai had a strong impact on his siblings. Hannah tells me about the time she took her kids to a wedding where there was a mother with a clearly 
brain-damaged little girl. 


Hannah’s children quite naturally went up to the little girl and were soon playing and laughing with her. Then Hannah spotted the mother, weeping uncontrollably. Worried 
that her children had done something to hurt the little girl, Hannah quickly went over to her. 


“I’m fine,” the mother assured Hannah, through her tears, “I’m crying because this is the first time in her entire life that anyone has ever, ever come up to my daughter and played 
with her.” 


No one but Hashem knows how long Natan Shai will live, but if love has any influence, his life will be long. 


“We have to look at the future positively; we have to believe that, b’ezras Hashem, he’ll live a long time,” 


Hannah tells me, seriously, “because Natan Shai is so much a part of us that not one of us can imagine life without him.” 


Hannah and Naor Levi can be contacted through Mishpaca Jewish Family First www.mishpaca.com 




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