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Special Needs Spotlight: Hydrocephalus (Hydrocephaly)

Special Needs Adoption Pre-Adoption Medical Hydrocephalus

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  Written by EAC on 23 Aug 2016

Adopting a child with special needs may involve extra work and focused attention for adoptive parents, but it doesn’t mean they will miss out the joy of being a parent. Children with special needs are like any other – they love, they laugh, and they need a home of caring people. The only difference is that they may require special attention specific to their needs.

In fact, for many adoptive parents, caring for a special needs child can instill a sense of pride at having helped provide a happy, healthy life to a child many others may have passed over.

Among the special needs adoptive parents may encounter is Hydrocephalus, or hydrocephaly. Hydrocephalus is an abnormal accumulation of spinal fluid in the brain, once informally called “water on the brain.” It is a relatively rare condition, impacting perhaps 1 to 2 of every 1,000 babies born. The causes are not well understood – they may be genetic or may include complications from premature birth or various diseases – but the symptoms and treatment are well understood.

Symptoms can vary based on age, how far the disease has progressed, and tolerances to the condition, but they may include:

In Infants:

  • Enlarged skull

  • Rapid increase in head size

  • Vomiting, Sleepiness & Irritability

  • Downward deviation of the eyes

  • Seizures

In Older Children:

  • Headache, vomiting, nausea

  • Lethargy, drowsiness, personality changes & irritability

  • Blurred or double vision

  • Downward deviation of the eyes, aka “sun setting”

  • Balance and coordination problems

  • Urinary incontinence

  • Slowed or reversing developmental progress, memory loss

General Symptoms:

  • Impaired bladder control

  • Difficulty walking

  • Progressively worsening mental impairment, dementia

  • Slowed movements

Thankfully, Hydrocephalus can be a treatable condition. However, it’s important to note that the prognosis can be difficult to predict, and complications can lead to long-term symptoms that may not be treatable.

Current Treatment

The current treatment for Hydrocephalus involves the use of a shunt system to divert the flow of fluid to another part of the body. There are other surgical treatments, but they are rare and tend to be possible with only a very small percentage of those suffering from the ailment.

There can be complications with the shunt system. These can include underdraining, which fails to slow or reverse the effects of the disease, or overdraining, which can cause collapsed ventricles, headache, and hemorrhaging. Other complications from shunts, including infection, may also result.

Prognosis

Though a vast amount of research has been done by the National Institute of Neurological Disorders and Stroke (NINDS) and the Hydrocephalus Clinical Research Network (HCRN), it remains difficult to offer a clear prognosis for those with hydrocephalus. The NINDS indicates that “the degree to which relief of CSF pressure following shunt surgery can minimize or reverse damage to the brain is not well understood.” Untreated, the disease can be fatal.

That is not to say children cannot go on to lead full, normal lives. In many cases, treatment coupled with rehabilitation therapy and educational intervention allows children to go on to lead fulfilling lives with few limitations. Though Hydrocephalus does pose risks to a child’s development, both physically and cognitively, if treated early and followed up by specialists, many adoptive parents can expect a positive outcome for their child.

In fact, some people may even go on to a full recovery with no complications later in life. The key is early diagnosis and treatment.

And as a prospective adoptive parent, that’s exactly what you would pursue if granted adoption.

Click on the image below to view children available for adoption with hydrocephalus

With the sometimes limited medical information available on children available for international adoption, it is recommended that all prospective families contact an International Adoption (IA) medical professional to receive professional input regarding a particular child’s medical and development condition. 

 




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