Kwan's Story

The following is a letter of introduction that  Kwan's Dad wrote to one of our families: He has given me permission to share it and Kwan's pictures in the hope that it will help and give hope to other families in a similar situation.

I was just browsing through the internet for information on hydranencephaly in preparation to cope with the future situation and realities that we may facing it since we are providing care for one year old boy born with hydranencephaly that we are planning to adopt him soon. I, Chagan (Chuck) Sheerajin, and my wife are both US citizen from RI, of 57 years of age, currently living in Thailand but planning to move back to the USA next year.

First of all, I would like to express my admiration to you, your wife and
your daughter for the effort to give your best to your late son. It takes an
extraordinary efforts to pulling the family through this situation and still
keep good mental health. One year ago, my wife has taken a custody of a baby boy born with large soft head that diagnosed as hydranencephaly. He was practically left alone in his apartment to die because his parents has to support other three young children and one of these already in vegetative conditions due to brain damage. It is too difficult to them to accept another one of similar situation especially when the doctor told them that the baby will not live beyond a few days, or months. The boy's name is "Kwan" (means "courage"). When we took over the responsibility to providing care for Kwan, we only hope for less than 5% chance of survival. We took him to the hospital in hope that we may be able to get a second and third opinion but still in hope to hear some different opinion in Kwan's favor. We try to get the doctor to perform VP shunt to stop his fast growing head that initially was 17" (43 CM) and has grow up to 24 (62 CM) inches at 3 months old and 29" (74CM) at 6 months old. None of the doctor would perform VP shunt for us for a reason that "it's useless, he will be in risking of infection, he will die anyway, no chance of recover from hydranencephaly". Finally at age of 9 months, we took Kwan to another doctor who give us a similar reason as others but mentioned that it's too late. It would be a better chance if we would come to him when Kwan was in the first few months. We were successfully convinced a doctor to perform a VP shunt for Kwan for the reason that Kwan will not live another month without a VP shunt. We did not expect any miracle but we can not lay back to watch him in pain and let his head burst and die before our eyes. We are willing to accept the consequences that caused by our decision. Kwan was so lucky to have this VP shunt installed. At that time, his head was 36" (92 CM), the skin on top of his head was paper thin and ready to developing a rash marks that can cause skin infection. We learned later that the doctor that performed VP shunt installation for him is the most famous and well known Neurosurgeon in Thailand.

We are now very happy to see him feeling better while his head is getting a little smaller to 27-28 inches and it expected to be much smaller in the future since his skull is still has 4-5 inches gaps. We are now starting to stimulate him to use his hands and legs pushing away objects in hope that he will gain some motor skills. Physically, Kwan looks like a normal boy of very large head he will focus his eyes on people that walking by and watch a TV. He response to noise and other sounds including recognizes myself and my wife. He seems to be able to distinguish  us from others but we are not sure. We are planning to formally adopting him and bring him back to the USA with us if he show significant improvement in his motor skill. We also thinking of an alternative to hire a
trained person to care for him in Thailand if he would be in vegetative stage. At the mean time, we continue our search for ways to help him. Most urgently is hoping to find a way to make a helmet to restricting his head's growth and to keep it in a acceptable shape and size so it's not preventing him from sitting up or from getting up (if he could). We found ourselves very attach to him to the level that we would understand his needs for his expressions. He has grown form a person who we provided supports to be our son and a central part of our family that we tend to change our schedule and even our lifestyle according to his needs. As for the future??. We will do our best to support him and to encouraging him to do things for himself.

Thanks for listening to the long story and please give us some suggestion to help Kwan.

Note:
Now Kwan is 16 months old. He is doing very well his head reduced to 26" (66 CM) and will become smaller, his motor skills and his using of hands still need to work on but his intellectual level is not too far below the baby of the same age. We are very happy of his progress for Kwan has progressed beyond our expectation. My only regret is that could not convinced the doctor to perform a shunt on him since he was 3 months old. The doctor has the reason " He would die soon anyway". If the doctor would listen to us then, he would be just like other normal child. At 26" or 66 CM, it's still too big and too heavy for Kwan to keep his head up and it would damaged his spinal if we try to sit him up too long. Now I have to take him to another doctor to see if they can perform a surgery to remove an excess piece of skull that prevented Kwan's head to close to a smaller size.

I am sure that Kwan will be with me for a very long time.

Update: November 2001
I have not been giving any update on Kwan since he was 11 months old. Kwan is now 17 months old and doing great. He is very happy has no problem whatsoever be sides his enlarged head that prevented him from sitting up and problem of using his hands. The size of his head is now 71 CM or 28 inches (normal adult's head is 53 CM or 21 inches). It's quite a good feeling that his head has reduced 20 CM (from 92 CM) when the shunt is in place. 

Kwan has no seizure, he's only tightened his fists and legs when excited. The medication that he is on is sefmex (Selegiline HCL) 5 Mg twice a day to stimulate his tiny brain and Lorazepam, 2.5 Mg in the evening to relaxed him.

He is still so adorable and likes to be with the grown up, especially with female he will give a big greeting smile and move his mouth as if he can talk even he can not even say "mom" yet. He is smart enough to make a distinctive one word voice to let me know if he need help to turned over his enlarged head. He gives response to my simple yes/no questions by moving his hand, shoulder or mouth so at least I can communicate with him. He can also close his eyes lids tight when I asked him to do so. I only have one complaint, Kwan has never give me any smile in months. He just look at me as if he wanted to say " It's your job, Dad!". In opposite, if Nancy or any of her (female) friends come for a visit. He suddenly become an excellent host, smiling and making gestures to exciting every one and he enjoyed it very much

We went to visit a neuro surgeon yesterday and discussed if Kwan will need any operation to remove some of his skull to reduced the size of his head. He concluded that it can be a very complicated one and requires several operations. We should better wait  a few more years and enroll him in to a physical therapy program to stimulate his  uses of hands, get him to sitting up and standing up. While visiting the neuro surgeon, I've met so many people with the hydros and hydrans kids. They complaint of no information available for them on how to cope with the problem raising up their kids. I introduced our group to them but I am not so sure if we can be any beneficial to these parents since there still be a language barrier for them to overcome.