My Baby Has Hydrocephalus: What Should I Do?

Hydrocephalus is a serious condition usually occurring in utero or infancy which can have a life-long impact on a child. Hydrocephalus can be easily diagnosed in utero or shortly after birth. If it is caught early and treated, its harmful effects can be mitigated. However, failure to diagnose and treat the condition in a timely fashion can cause permanent and irreversible damage to a child, and can forever change their life.

This week, we explore what this condition is, how it can be treated, long-term effects it may have on a child if untreated, and what recourse parents may have if the condition is not properly identified and addressed by doctors.

What is Hydrocephalus?

Fundamentally, the name Hydrocephalus is made up of two words “hydro” (i.e. water) and “cephalus” (loosely translated to head). Hydrocephalus can be called “water on the brain”, and occurs when the cerebrospinal fluid (CSF) does not properly absorb and builds up within the skull.

Usually CSF flows in and out of the brain’s ventricles, and around the brain and spinal cord. In cases of hydrocephalus, the fluid cannot move to where it is supposed to, or cannot be absorbed. This causes a buildup of cerebrospinal fluid in the head. In other cases, there may be an overproduction of cerebrospinal fluid which cannot be absorbed or circulate properly. When enough CSF accumulates, it causes the skull to stretch, creating a tell-tale extended head shape and placing dangerous pressure on brain tissue.

The excessive pressure caused by excessive CSF must be taken very seriously and addressed right away, since, left untreated, it can cause severe and long-lasting health problems or death.

Signs of Hydrocephalus

Some early signs of hydrocephalus in newborns (or babies under the age of 1) include:

  • A swollen or oddly shaped head (usually due to bulging fontanel, which is the soft spot on the skull).
  • a large head or rapid increase in head size (circumference).
  • The appearance of a gap in the bones of the skull
  • Large swollen veins
  • extreme fussiness.
  • Downward looking eyes (also called “sunsetting”)
  • excessive sleepiness or lethargy
  • poor feeding.

In more severe cases, a baby might experience unexplained vomiting, seizures, and miss developmental milestones.

What Causes Hydrocephalus?

There are two separate types of hydrocephalus: congenital hydrocephalus and acquired hydrocephalus. Both types of hydrocephalus can be diagnosed and treated.

Congenital Hydrocephalus

Congenital hydrocephalus is present at birth, and can be caused by a complex interplay of genetic and environmental factors during fetal development and pregnancy, including:

  • Infections to the mother such as toxoplasmosis;
  • Birth defects, including neural tube defects such as spina bifida;
  • Genetic defects.

Finding the condition early and treating it as quickly as possible can help limit long-term impact on the baby, including permanent brain damage. Congenital hydrocephalus can be diagnosed before birth through a routine fetal ultrasound.

Acquired hydrocephalus

Acquired hydrocephalus develops after birth due to various neurological conditions including brain tumours, cysts, infections such as meningitis, intraventricular hemorrhage, or head trauma including trauma during delivery or after birth.

Treatment: What Should the Doctor or Hospital Have Done?

Early detection of hydrocephalus is critical in order to begin intervention and treatment to prevent permanent brain damage. Most babies have a series of follow-up appointments with their doctor to ensure that their health and development are going as normal. However, a child who shows signs and symptoms of hydrocephalus should see a pediatrician as soon as possible. The doctor will do an physical examination and probably order a series of diagnostic tests — such as ultrasound, CT (computed tomography) scan, or MRI (magnetic resonance imaging) — in order to get an understanding of what is going on inside the baby’s skull.

Early treatment of hydrocephalus is critical in helping limit or prevent brain damage. Treatment of hydrocephalus usually focuses on reducing the amount of fluid in the brain, thereby reducing pressure on the brain.

Treatment can vary depending on age, the cause of the cerebrospinal fluid buildup, and the overall health status.

In most cases, doctors place a shunt (a type of flexible tube) in the brain of an infant with hydrocephalus to drain the CSF. The shunt safely drains the CSF to another part of the child’s body (generally their heart or belly) and the CSF is absorbed back into the body. Shunts can have a valve to regulate the flow of CSF and prevent over-draining. The shunt can remain in the child’s head for life, but will need to be replaced or fixed if there is an infection or blockage. There is always a risk of infection with any surgery.

In other cases, an endoscopic third ventriculostomy (ETV) may be used in lieu of a shunt. During the ETV surgery, a small hole is made in a deep part of the brain to allow the CSF to flow more freely.

Emergency treatment of hydrocephalus includes a lumbar puncture (i.e. spinal tap), or other procedure to drain the CSF until a shunt can be installed.

Long-Term Effects of Hydrocephalus

With timely intervention and treatment, many children lead fairly average lives. However, potential long-term effects of untreated or undiagnosed hydrocephalus include:

  • Cerebral palsy;
  • Balance problems, problems coordinating motor skills;
  • Seizures;
  • Visual problems, including blurred or double vision, eye misalignment, or loss of vision;
  • Incontinence;
  • Memory loss, confusion, or forgetfulness.

Medical Malpractice and Hydrocephalus

If you think that your child’s hydrocephalus was overlooked before, during, or after birth, you may have grounds for a medical malpractice lawsuit that could provide you with the compensation you need to provide financial security for yourself and your family.

In addition to damages that may be awarded to children and/or their families for pain and suffering due to injuries they may suffer due to medical error, families may also be eligible to receive other compensation, including:

  • Expensive rehabilitation therapies and equipment;
  • funds for expenses such as modifications to an existing family home (e.g.: modification of bedrooms, bathrooms, and kitchen, widening of doorways to facilitate wheelchair access, adding an elevator, and similar);
  • purchase of a new home that is closer to hospital and other medical services;
  • attendant care services such as private nurses or personal support workers (in addition to those covered by provincial government funding).

These are often multi-million dollar expenses, little of which will be covered by provincial or other healthcare plans, and can be prohibitive for parents to undertake without the added assistance of a damages award.

At Sommers Roth & Elmaleh, our goal is to protect the rights of children and parents whose lives have been impacted by medical error or negligence. Over the years, we have won some of the largest medical malpractice awards in Canadian history for our clients. We offer contingency fee agreements. Call us at 1-416-961-1212 or contact us online for a free consultation.

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