Since I started reading about shunts and stories of malfunction I have always wondered and feared how we would know if something is wrong in a child that is too young to talk. Some of the symptoms of shunt malfunction are vomiting, downward deviation of eyes, sleepiness, fussiness, headaches, etc. Most of which can also be caused by other illness or even teething. There have been a few times where Morgan's fontanel has been bulging for several days in a row and we never knew at what point do we call or go in to have it checked.
Today she was very sleepy all morning (would hardly wake up). Our summer nanny was watching her while I worked from home and after feeding her breakfast & a bottle said she vomited a little bit. We have also noticed her fontanel has been bulging for 3 days now and have been watching. So late morning I called her neurosurgeon nurse and she asked us to try feeding her lunch again after she woke up from her nap and if she is unable to hold it down then we should probably bring her in. I had a gut feeling all morning something was not right (and she wasn't sick). Sure enough after lunch she vomited A LOT so we called back and headed in for them to take a look.
By the time we got up to the neurosurgeon she was looking a little better but we were worried about her getting dehydrated from vomiting up all of her milk & food all day so tried to give her another ounce of milk. She kept that down so we gave her another. She OK for a little bit but as they were examining her and deciding how to proceed (to get scans, etc.) she started vomiting again. They tried to tap her head and were unable to get any fluid which meant that the shunt malfunctioned somewhere between her ventricle and the shunt reservoir. Since she was feeling so terrible they ultimately decided not to wait and admitted to the hospital to prep her for immediate surgery (shunt revision). Ugh- our worst fears of her shunt not lasting long came true :(
It is worth mentioning also that at some point after her initial shunt surgery I was reading and researching shunt malfunctions and alternative solutions and came across the ETV/CPC procedure Benjamin Warf was doing at Children's in Boston & they were doing at Children's in Seattle. From what I understand the ETV procedure clears the obstruction and if done with CPC (cauterizing the choroid plexus to reduce the amount of CSF produced) it can be very successful resolution of hydrocephalus and eliminate the need for a shunt. I had Morgan's medical information and scans sent to Seattle for them to tell me if she was a candidate for this procedure but found out since she never had a full MRI they cannot tell (if MRI reveals a major artery is too close to the 3rd ventricle the person is not a candidate). I asked our Neurosurgeon about this and if this is an option instead of shunt revision but it was immediately discarded and I was told the risk for further brain damage is too high. The would try to do ETV during the surgery to replace the shunt.
Her surgery took place later this evening and all went well (same old drill meeting the anesthesiologist, signing paperwork and prepping in the PICU). They decided to replace the entire shunt with a programmable valve (versus the self regulating which she did not have success with). It is programmed magnetically and set to 100 to start with (can adjust accordingly depending on how she does). They were unable to complete ETV procedure due to a large amount of scar tissue present. She was brought back up to the PICU after her surgery and at this point it was pretty late so we let her sleep as much as possible.
My Journey with hydrocephalus and Cerebral Palsy
Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.
From Wikipedia, the free encyclopedia:
Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.
