When I saw a post from a friend who works with the Hydrocephalus Foundation Incorporated, I suddenly recall that kid I saw a year ago. Guilt in my side though I don’t have any means before and doesn’t have anyone to ask anything about his sickness, I told myself that this is the time that I could help. I told to my friend that I saw a kid with this kind of condition. He was sleeping then like an angel but with this bigger head than any other kids.
From the Internet: “Hydrocephalus is a buildup of fluid inside the skull, leading to brain swelling. Hydrocephalus means "water on the brain."
Hydrocephalus is due to a problem with the flow of cerebrospinal fluid (CSF), the liquid that surrounds the brain and spinal cord. The fluid brings nutrients to the brain, takes away waste from the brain, and acts as a cushion.
CSF normally moves through areas of the brain called ventricles, then around the outside of the brain and the spinal cord. It is then reabsorbed into the bloodstream. Buildup of CSF can occur in the brain if its flow or absorption is blocked or if too much CSF is produced.
This buildup of fluid puts pressure on the brain, pushing the brain up against the skull and damaging or destroying brain tissues.
Hydrocephalus may start while the baby is growing in the womb. It is commonly present with myelomeningocele, a birth defect involving incomplete closure of the spinal column. Genetic defects and certain infections that occur during pregnancy may also cause hydrocephalus.
In young children, hydrocephalus may also be associated with the following conditions:
· Infections that affect the central nervous system (such as meningitis or encephalitis), especially in infants
· Bleeding in the brain during or soon after delivery (especially in premature babies)
· Injury before, during, or after childbirth, including subarachnoid hemorrhage
· Tumors of the central nervous system, including the brain or spinal cord
· Injury or trauma
It was September this year, 2011 when I got this invitation for a Tagaytay retreat, it was from Sister Jet of the Good Shepherd Sisters through my friend Wenchie Flores- Sabban. I asked my mother to come with me, a frustrated nun and she is choosing between a religious retreat or my aunt’s casino galore. She said she likes to pray and be with me, I love it when my mother joined me to my advocacy. It was 10 am in the morning and I know we are late, were supposed to be there at 8:30 am but my friends van wasn’t there yet, oh I am the first one apparently who arrived.
It was a joy meeting with five other members of the foundation. Two of them are with a Hydro kid and he other two lost their kids already because of this sickness. Sister Jet told us to see the scenery first, were at Tagaytay mountain, fresh air, colorful and pretty flowers, colder than Laguna and we could see from our place the famous Taal volcano. After that we took some pictures then sister Jet asked us to have a meal she prepared at the canteen.
After that delicious meal we headed to the prayer room, Sister Jet together with Sister Camilla and another novice started with a prayer and a song. She first shared some experience oh so wonderful experienced she had back at Madagascar, on how she thought it was her last day and telling us how filthy waste water in some parts in Africa where she spent some of her time. Then came the sharing part. She asked us why we are there and everything we thought lead us to where we are now. Somebody raised her hand and told her if she could start the sharing and that was me.
I told them that because of that one kid I saw a year ago in my place in Calauan, Laguna and because of the opportunity that the foundation could give to him, I think the reason why I am there, nothing stop me and it was Saturday, the busiest of all my days because of client meetings and project inspections. I even have my mother with me, I told everyone that even though we all have problems and I for one have a problem of my own, compare to the feelings and sorrow of a mother with hydro kids, m problem became nothing. I cried, I felt so lucky having three healthy daughters, I can relate because I am a mother too and will do everything for my children, even giving them my own life. I saw some mothers are crying too. Well that’s me.
I will not forget Michelle, when we were still at the canteen having our meals I asked her the age of her kid and she said more than one year old and very thankful about the foundation, the operation cost is free and feel more luckier than others. That was when we were at the canteen. Now it’s her time to share, the spotlight all to her, she said that she lost her kid already. We were all surprised. She still can’t accept that her kid is gone, she was crying even asking God why, why not to those parents who are not good in taking care of their kids, why not to those kids in he streets? Why not to those kids who are living in the esteros? Why with her kid, their first born and only child.
Everyone shared experiences. Another one told us that she did not expected that a retreat like this. She thought it’s more like a picnic. Her story I think is one of the difficult part for the decision she and her husband made. They adopted a healthy child who eventually got this kind of sickness. The question if they will return this baby or not was a painful part but because of love, they keep the baby.
That was last week, today September 29, 2011, My assistant and I went to this place at Baranggay Dayap known as “Kulong”, This Baranggay is the most populated among the 17 Barangays because of the “Bayan ni Juan sa Calauan, Binay Compound and Habitat for Humanity. From 2007 the population in Calauan went up from 54,000 to more or less 70,000.
I went to Kulong last year and I met this kid name Ronnie Bartolome, she is 5 years old now with four siblings. He doesn’t have a father anymore and his mother is working as “tagapag gapas ng palay” meaning, “kung walang aanihin, walang trabaho.
Her mom told me that his last check up was when he was still one year old, after that they didn’t go back to PGH, the doctor said last time that baby Ronie needs to have the operation but her mother knowing it will have a 50/50 chance and a big risk so she just settle for not doing anything to her kid without the help of the doctors even it is for free because of the big risk of surviving the operation.
The neighbors and the grandmother of baby Ronie are convincing the mother even for a general check up with me, I even told them, even healthy babies are having check ups, baby Ronnie need it most because of her condition. Kulong where they live will be reach by foot only from the Barangay road and is 3 kilometers long, there is no road there actually but you will find yourself walking “sa pilapil” at the rice fields. It was called KULONG cos they said “if bumagyo, para kang na kulong na at di makakalabas dahil baha ang buong palayan.”
Kulong doesn’t have any electricity and water supplied by a water company. It is composed of more or less 50 families. That is also one thing they ask for all local official, light to guide their way and for the children. My assistant and friend Robie said that it’s like you are living outside Calauan when you are at Kulong, like a different community, near but different. I wonder if the provincial government knows anything about this place, even something about our little Ronnie. The people there said that nobody dares to come back there after election and nobody from the provincial government campaigned there though they are legal residents already. I saw a lot of kids, they even showed me some documents from DSWD that they are indigents. For me no need for documents, I could see and feel that they are part of the majority. They wanted t be heard, they want baby Ronnie to play alongside other kids, he is a happy boy, I am just waiting for his mothers call or text, for her next health check up after four year.
Robie is here and told me that there’s another one, a girl with a hydrocephalus from “LOOBAN”, another place from Calauan under Barangay Silangan this time, our main town proper, I wonder if the Local government heard about her, all I know is we know now, we will go there next, it doesn’t cost to help, we just need to start and try.