In the NICU: Preparing Families for Life with Hydrocephalus

By Aparna Srinivasan

A recent study, “Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus,” was published in the American Journal of Perinatology. The study, conducted by primary author, Dr. Rebecca Dorner, explored how neonatal intensive care units (NICUs) can better prepare families that receive a diagnosis of posthemorrhagic hydrocephalus  of prematurity (PHHP).

What is posthemorrhagic hydrocephalus of prematurity?

A common complication seen in premature infants is bleeding in the brain. In some of these infants, the blood clots and blocks the flow of cerebrospinal fluid or causes other damage that leads to PHHP. Infants with PHHP can experience a wide array of neurodevelopmental deficits. Some of these include abnormal motor abilities, cognitive delays in memory and intellect, and attention deficit hyperactivity disorder.

Hydrocephalus presents many challenges for the individual that it affects, but also impacts the parents or primary caregivers. This study sought to understand the challenges parents face in the NICU and develop recommendations to address those challenges.

The impact of raising a child with hydrocephalus on parents

Many parents feel isolated especially when they are in the NICU. When a child is diagnosed with hydrocephalus, parents are typically unfamiliar with the condition and are overwhelmed by the large number of new words and phrases used in conversation with their child’s doctor. Without support groups or information on how they can connect with other families who are experiencing something similar, parents may feel as if they are alone in raising their child. This can be especially disheartening.

In addition, hydrocephalus can be unpredictable. Current treatments for hydrocephalus have high failure rates. Treatment failure, however, often causes hydrocephalus symptoms to develop that are non-specific such as headache, vomiting, irritability, and tiredness. This presents a challenge for parents and caregivers of children with hydrocephalus, as it can be difficult to pinpoint when a child is experiencing complications such as shunt failure. If a child has a fever and is vomiting, a parent of a hydrocephalus patient has no way of knowing right away if this response is due to a shunt malfunction or just a cold. This puts a lot of pressure on the parent to always be alert as they are ultimately responsible for their child’s health and care coordination.

The authors of this study hoped to identify the best counseling strategies to best prepare parents of children with hydrocephalus so that parents feel less isolated and anxious while raising their child.

The study and its results

In this study, parents of children who had been diagnosed with neonatal PHH were interviewed. The parents were English speakers and were recruited during 2019 Hydrocephalus Association Walk in Baltimore, MD and Washington, DC, or had previously participated in research studies conducted by the authors. These parents were asked questions regarding their preparedness for raising a child with hydrocephalus while in the NICU and after they were discharged.

It was commonly reported by parents that the initial diagnosis of PHH is very overwhelming to receive because of the large amount of new information. In response to this sentiment, the authors suggest that, in addition to improved, tiered neonatal counseling in the hospital, that NICU counseling tools can be developed for families like binders and organizers. These binders and organizers would detail important information regarding the condition, the various treatment options, what parents should expect in terms of shunt revisions and symptoms, as well as a question list detailing what parents should be asking their child’s doctors. Children with hydrocephalus present with very varied symptoms but tools like these can help parents review and make sense of large amounts of information and find comfort in knowing they understand their child’s condition.

In addition, some parents reported that they were not informed of all the treatment options for their child when they were in the hospital. These parents felt as if they were excluded from the conversation where their child’s treatment plan was decided, and, if they had been better informed, they may have inquired about alternative treatment procedures like the endoscopic third ventriculostomy. This brings to light the need for better communication between the doctor and the parents as well as the need for better support for these parents. The researchers in this study suggest neonatal counseling as a way to support parents. This would ensure that parents have the knowledge and resources to ask the right questions regarding their child’s health plan.

Parents shouldn’t have to feel isolated and alone while raising a child with hydrocephalus. Advocacy organizations, as well as neurosurgeons and neonatologists, must work together alongside parents to create informational tools as well as ways in which parents of children with hydrocephalus can engage with each other. Communicating with other parents who understand what they are going through is vital to ensuring that no parent feels anxious and isolated while raising a child with hydrocephalus.

The Hydrocephalus Association offers a wide range of resources to help parents and caregivers better understand the condition. Through its Helpline and Peer Support program, HA can provide much-needed one-on-one support and connect parents with others who have been in their shoes.

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