When Hoa smiles, it´s like the sun has risen. It is the biggest smile I have ever seen. You would think she has just thought of the funniest thing you can imagine. Her smile is contagious. I cannot wait for her to tell me the joke she just thought of. But she never will. Because Hoa can´t speak. She can also most likely not hear or see. She can barely move. Hoa suffers from hydrocephalus, a condition also known as “water on the brain”. An illness that has already decided an early end for her young life. Hoa is three years old and lives in a children´s centre in Vietnam, abandoned by her own parents who were hoping that she would receive better care somewhere else. And she is not the only one.
Hoa shares her room with twenty one other young children. They all live in a small room on the second floor of a big children´s centre in a big city in Vietnam. The kids are between one and ten years old and of them has a severe disability, but it´s hydrocephalus that the majority of them is suffering from.
What exactly is Hydrocephalus?
Hydrocephalus is a brain condition that occurs when cerebrospinal fluid (CSF) can´t drain from the brain. Cerebrospinal fluid is the fluid that surrounds the brain and spinal cord as well as protects it. It usually flows through different channels of the brain until it leaves to fill the skull and spine whereon it finally gets recycled into the bloodstream. But if there is a blockage at any point during that journey, the fluid backs up, pools and causes a build-up of fluid in the skull which then causes hydrocephalus.
Hydrocephalus can occur to people of any age due to things like a head injury or tumour. But most of the time it´s an illness that babies get born with. Once the baby is born the child´s head swells to give space for the excess fluid which results in the unusually big and unformed head that is more commonly known as “water on the brain”. Without early treatment Hydrocephalus can lead to a loss of mental and physical abilities and often results in an early death.
The moment you first make contact with hydrocephalus
The first time I went to visit the children`s centre I had no idea about the medical diagnosis of hydrocephalus. All I had ever seen were pictures of children with big heads on TV and the internet. So I have to admit – when I saw the children for the first time I was shocked. There were these tiny kids lying on the floor with a head that was way too big for them. Unable to move. Unable to speak. Unable to hear or see. Just lying there motionless staring to the ceiling. I was overcome with such a pity and I could hardly hold back my tears. A reaction that I think many of us would have when confronted with an illness like this for the very first time.
But let me tell you something – these children are beautiful. In every way possible. How do I know? Because I have spent the last six months visiting them twice a week on behalf of the Little Feather Foundation. The NGO was founded by two Australians who believe that despite their severe illness these kids have a right to feel loved and cared for. Many of the children´s parents were, for different reasons, no longer able to care for them and gave them up. All the kids have left now are a handful of nurses and nannies. But as the children´s centre is run by the government there is only enough money for approximately one nanny to ten children. Which isn´t even barely enough. Imagine you were a child and you constantly experience strong headaches and muscle pain. Or even worse, the pressure on your skull from lying down all the time has broken up the skin on your head and you now have open wounds on your head. And there is no one who cares for you, takes you into their arms or just holds your hand. It´s a cruel picture to imagine. The Little Feather Foundation decided to change this. We can´t take away the condition, but we can still give love and warmth to the kids and at the same time try to reduce their pain as much as possible through various methods. This kind of care is called Palliative Care.
Palliative Care – what is that?
There is so much you can do on a day-to-day basis that will reduce the children´s pain as well as make them feel loved and not alone. Every morning when we come in we sit the kids up in bouncers. As they can´t hold up their head with their own strength they lie the majority of the day. Sitting them up is a great way to take some pressure of their heads and to strengthen their neck muscles. We then make sure that their eyes are cleaned from sleep as well as apply Vaseline to their dry lips. Leg massages with baby oil help to release tension, relax and help the circulation and digestion of the kids. And we cuddle a lot. Everyone who has had children or spent some time with babies and young children knows – they love to cuddle. It´s not any different with kids who are suffering from hydrocephalus. Just because they can´t vocalize it doesn´t mean they wouldn´t love some attention and a big hug every now and then. Basically we do what you would do with any other child – we talk to them, smile with them, simply spent time with them. And what I have experienced in those times is truly incredible.
Putting Trieu into a bouncer can be hard labour. This girl is heavy! But she is so sweet. For some people Trieu might be the hardest to look at of all the kids as her head is really big and the pupils of her eyes sometimes go behind her eye balls which makes her look a bit scary. But once you get past that you realize how sweet she is. She sleeps with her eyes open and only cries when she can´t digest properly – which luckily happens less and less.
Mai is such a sweetheart. She basically always sleeps. I can probably count on one handthe times Mai didn´t complain about being woken up to put her into a bouncer. Once in her chair she is sound asleep again in less than ten seconds.
If you are looking to get into meditation, see Lien for help. She is the Guru herself. Wherever she is, if she lies in her bed, on the floor cushions or sits in the bean bag – she is always in mediation pose. With her arms in half a triangle pose and the thumb and forefinger pressed together it´s pure yoga. And then, when she recovers from one of her regular coughs and she makes this little “Aaaah” sound – it´s just too cute.
Minh Hy is one of the few boys in the room. He was fine when I started volunteering but lately he started to have a really bad time. From lying in the same position too often, pressure points developed on his skull which caused open wounds on each side of his head. The last couple of weeks he has been unable to lie with the other children as any kind of movement causes him an immense pain. It really is heart breaking to see him lying in his bed in the corner, with his small fists clenched, silently sobbing as the pain must be unbearable. In moments like these you really do feels so helpless. But all we can do is try and make him feel better somehow. One way to do that is to hold a lollipop to his mouth and let him taste it. As the children get fed through a tube this is the only way for them to taste something. Oh, and what a joy it is to watch Minh Hy taste that Lollipop. For thirty minutes of the day he can forget about the pain he is in and enjoy the taste on his tongue. It is just beautiful to see.
And then there is Min Phúc. I know you´re not supposed to have favourites – but how could I not? This boy is just a joy. In contrary to most of the other children Minh Phúc doesn´t suffer from hydrocephalus. Instead he has a condition that does exactly the opposite – instead of swelling up his head is just not growing. With some kids you can be sure that they are not able to see anything, but with Minh Phúc I´m not sure. I have been volunteering at the children´s centre for about six months now – and I know it´s very unlikely but sometimes I could swear he can recognize me. I always touch his cheek in the same way when I come to his bed and lately he has been giving me this little grin that just makes your heart melt. Oh and wait for when he is in a good mood. This boy can sing! He just starts making these noises that go like “Ooooooh” and “Aaaaah” and in what a volume as well. He has always reminded me of that old cowboy who sits at the bar after a long day of work, having a cold beer and telling his friends about all the mischief he has been to that day. That´s what Minh Phúc is like. He literally makes my heart melt.
Of course there are more than just the children I have mentioned. Unfortunately for the length of this article I cannot describe every single one for them, even though they would more than deserve it.
It is hard to imagine what life must be like for these kids suffering from hydrocephalus. They were born with an illness which wasn´t their fault. And here comes the probably most tragic part: Hydrocephalus can be cured. With an early diagnosis and the right and fast treatment most children recover successfully. But it´s expensive. And it´s money that most of the people in Vietnam don´t have. At least not the thousands of Vietnamese people living in the poor countryside. So instead of having the chance to a normal life, they were abandoned by their own parents and are now living in a big children´s centre in the middle of a big city. They rarely leave their bed, they almost never see anything outside their room. They spent every day in that room with no one to come around and spent some time with them, hold their hand or cuddle them. Except us for three hours a day and the handful of nannies who have barely time for a fast stroke over the cheek. A lot of the time they suffer strong headaches and sore muscle and in the worst case open wounds that cause them immense and almost unbearable pain. This is the sad way of looking at it. A true, but sad way.
I don´t like to look at it that way. Instead, Iencourage all of us to see the positive things. Yes, everything said above is true. But these children are more than just that. These are twenty one individuals who all have their own personality. Each and every one of them is so special in their own way. There is no sound in the world like Min Phucs singing and no one has a more beautiful smile then Hoa. Because of their severe disabilities you can easily forget that these kids are just like me and you. They want to be loved and cuddled. They scream out their lungs when they feel like they don´t get enough attention and the second they are in your arm they calm down and give you a cheeky smile. They are just like me an. So let´s treat them like it and let´s make their life as beautiful as we can. Because I don´t know any other group of children who would deserve it more.
Unfortunately in the world we live in, money rules. And in a poor country like Vietnam it rules even more. As the children´s centre is owned by the government money is a thing that isn´t available. As a result almost everything that the children need is there because of donations. The bouncers are bought from donations. The microfiber pillows that are essential for the kids to lie comfortably without any pain are bought on donations. The clothes they wear, the books we read to them, the baby oil for their massages, even the medicine and dressings are bought from donations. We can give them the love and cuddles they deserve – but for the rest we need you. Every Dollar helps. And I am not just saying that because that´s what you always hear people say, no I am saying it because it`s true.
I have set up a justgiving fundraising page where everyone of you out there who feels like this is a worthy cause can donate any amount they would like to give. With your donations we can buy some dressing for Nhan and Minh Hy so their wounds are protected properly and can hopefully finally heal. We could buy more microfiber pillows (as we don´t have enough at the moment) that can prevent those devastating wounds happening in the first place. And we could finally get more bouncers and bean bags as the children are slowly but surely growing out of their old ones. So Lien can finally do her meditating sitting up again instead of lying on the floor.
These children will still suffer from hydrocephalus. Their parents will still not come and take them back home. But I promise you from the bottom of my heart, with your help, as little or big as it may be, together we can make the life of these children as full of joy, smiles and love as it can be. They will never be able to say thank you, but those moments when they smile at you are all the `Thank you` s in the world that anyone could ever need. Thank you!
If you would like to help the children with some donations
You are more than welcome to check out the small NGO I am volunteering for: http://www.littlefeatherfoundation.org/ (You can also donate directly through their website)
Last but definitely not least – if you feel like this is an important cause, please feel welcome to share this article and the justgiving link with family, friends, work colleagues or the neighbour down the road. Also, if you have any questions, please feel free to contact me via this blog. 🙂 Thank you!
… and here are some more few impressions from our kids…