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My Child Has Hydrocephalus, Cerebral Palsy, and Global Development Delay: How It Happened
PHOTO BY courtesy of Jam Apao
  • Our family is blessed, having Seth around. It makes us patient with mundane things. It gives us hope when everything seems hopeless. I remember the time when Seth was in pain. He literally cries non-stop as if he is being tortured.

    I don’t understand why it has to happen to him when he has done nothing wrong. But who am I to complain? Who am I to question? To see him around is already proof that we are winning it. 

    The above was part of a Facebook post my husband Mark wrote back in 2010. Our son, Johan Seth (we call him Seth), has gone through so much pain and challenges the moment he was born, but, as a family, we are choosing to see the brighter side of things.

    Seth has hydrocephalus, cerebral palsy, and global developmental delay caused by meningitis, which he acquired when he was born. Meningitis affects the meninges, or the membranes that surround the brain and spinal cord and protect the central nervous system (CNS), together with the cerebrospinal fluid.

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    The doctor told us to be prepared — it was short of saying, “your son will not make it.”
    PHOTO BY courtesy of Jam Apao

    Seth, who was born prematurely at 32 weeks, was initially diagnosed with sepsis, pneumonia, and meningitis. He was incubated for two weeks until he could survive the outside world. When he got out of the hospital, we thought the worst was over. But a week later, we had to go back for another two weeks because of complications.

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    Since then, Seth’s body started to deteriorate, and his knees and thighs were hit by bacteria. Later, at two months, he was diagnosed with hydrocephalus, and he had to undergo three head surgeries. He was outfitted with a “shunt,” which redirects the excess flow of water in the brain to the stomach. He was barely 10 months old then.

    After his third operation, the neurosurgeon classified Seth with a “dirty brain.” It meant that during the time Seth had meningitis, his brain received so much stress that the infection left wounds on it. These wounds clogged the shunt and stopped the flow of fluid. The doctor said Seth had to go through a fourth operation to “clean’ the clog.”

    Only three weeks after the surgery, Seth’s head became noticeably bigger, and he began showing signs that he was in pain. We had to decide whether we want to have him operated on again or just surrender it to God. In the end, we opted for the latter with hesitation but with a lot of prayers.

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    Today, Seth is 10 years old. As a result of hydrocephalus, he is like a baby when it comes to his needs — he cannot eat or go to the bathroom by himself.
    PHOTO BY courtesy of Jam Apao

    It was a struggle for me and my husband to accept what was happening to our child. To see him fight for his life was disheartening and uplifting at the same time. It breaks our hearts to see him in pain, but knowing that he is also fighting the disease gives me the strength to fight it with him.

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    The most difficult moments, however, are his seizure attacks. We have gotten to know the signs pretty well: He would regularly laugh, or his body would become stiff without any reason. To avoid the seizures, we have to ensure that we give the right dose of medication at a given time. We also have to occasionally press his shunt’s pump to make sure it is functioning correctly. We also try to keep his surroundings clean to avoid any infection.

    I am blessed to have a responsible husband. We take turns feeding our child at night. This way, one of us can sleep and be reenergized the next day to get other things done. Seth has an older brother named Javier. He is protective of his brother and tries to involve him in his daily activities. Javier is the one who explains the condition of Seth to other kids when they ask.

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    I am also blessed to have found a caregiver who has been with us for six years, and she helps us take care of our son’s needs daily.

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    My advice to families who are dealing with a member suffering from hydrocephalus is to listen to your doctors.
    PHOTO BY courtesy of Jam Ampao
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    Looking back at what we have been through as a family and as parents of a child with special needs, we have learned to see things as blessings. Some we see and feel instantly, but some benefits unfold its real purpose at the right time. Seek help because there are people who are willing and able to give you a hand.

    Going through the challenges of raising a child with hydrocephalus, I know the needs of families who are in the same situation. Most of the time, a person with hydrocephalus requires a shunt, but many families financially challenged. For families who have members with hydrocephalus and for those who wish to donate, you may find support through theHydrocephalusFoundation.org.

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