fbpx
Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

BLOG

Secondary Microcephaly and HIE

October 24th, 2024  | HIE Education  | News  | Resources

 

Receiving a diagnosis of neonatal hypoxic-ischemic encephalopathy (HIE) can be overwhelming for any family, and learning that your child may be at risk for secondary microcephaly can add to those concerns.

To help navigate these concerns, we’ve compiled answers to some frequently asked questions (FAQs) to provide clarity, hope, and resources for HIE families.


1. What is secondary microcephaly?

Secondary microcephaly is a condition where a child’s head grows more slowly than expected after birth, leading to a smaller head size compared to children of the same age and sex. Translated, microcephaly means “small head” and secondary refers to it happening from something else (vs. congenital). In this case, secondary because HIE caused it.

This condition can occur due to a brain injury like HIE, infections, or other factors that affect brain development after birth. Unlike primary microcephaly, where a baby is born with a small head, secondary microcephaly develops over time.


2. What is the connection between secondary microcephaly and HIE?

Hypoxic-ischemic encephalopathy (HIE) is a type of brain injury caused by a lack of oxygen and blood flow to the brain around the time of birth. This injury can affect brain development, potentially leading to secondary microcephaly. Babies with moderate to severe HIE are more likely to develop secondary microcephaly due to the impact the brain injury may have on the brain structure itself and its growth and development.


3. How common is secondary microcephaly in children with HIE?

There isn’t a precise prevalence rate because it can vary depending on the severity of the HIE and how it is managed. However, research indicates that secondary microcephaly is more common in children with moderate to severe HIE. Not all children with HIE will develop microcephaly, but it’s something doctors will monitor, especially if the brain injury is significant.


4. How is secondary microcephaly diagnosed?

Secondary microcephaly is diagnosed by measuring the circumference of the child’s head over time. It seems like HIE baby’s have their head measured nonstop in the first year. The medical team will regularly measure the head during routine checkups and compare it to growth charts to monitor if the head size is within the expected range. If the head growth slows down or falls significantly behind the norm, the doctor may suspect secondary microcephaly. Some children may also have a visual appearance of “ridges” on their baby’s head.


5. What are the potential developmental impacts of secondary microcephaly?

Secondary microcephaly itself doesn’t impact development, but HIE can. Some children may experience delays in motor skills, cognitive development, speech, and learning. However, early intervention therapies, such as physical therapy, occupational therapy, and speech therapy, can significantly improve outcomes. Every child is unique, and many children with secondary microcephaly may have little to no impacts to cognition from their HIE and go on to reach significant milestones with the right support.


6. Can secondary microcephaly be treated?

There is no direct treatment to reverse secondary microcephaly. Many of our families will be referred to neurosurgery to rule out craniosynostosis which is a premature fusing of the fontanelle, or soft spot on a baby’s head. 99% of HIE babies will not need surgery and while the fontanelle may appear very small, it isn’t actually closed.


7. What do parents say is the biggest impact from secondary microcephaly to them and their child?

Parents express anxiety around head measuring the first year, mostly due to the frequency the medical team will chart it, but the concern wanes and acceptance prevails that it’s a medical term to describe a measurement of a part of their child’s body, and a visual reminder that first year that HIE has happened to their child, which can bring up feelings of grief and sadness.

Ridges often smooth out over time, and hair grows in. Most people would never guess that a child has microcephaly, unless you know what to look for.

Some children may wear smaller hats, and bike helmets can be tricky as well — but parents have shared that a rolled up bandana works well.


8. What is the long-term outlook for children with secondary microcephaly and HIE?

The long-term outlook varies greatly depending on the severity of the outcome from HIE, and how early interventions are implemented. Families are encouraged to focus on their child’s unique strengths and progress, and remain hopeful in their journey. Neuroplasticity in babies brains can compensate in unique and wonderful ways, adapting to change. Never underestimate the power of love, a positive home environment, and focusing on creating memories as a family!


9. How can I find support as a parent or caregiver?

Support is vital when facing an HIE diagnosis and the possibility of secondary microcephaly. Hope for HIE provides a valuable network of resources and emotional support for families. By connecting with others who understand the challenges, families can share advice, celebrate milestones, and navigate the healthcare system more effectively. These support systems help parents feel empowered and hopeful in advocating for their child.

Get Support

 

SIGNUP

Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.

  • This field is for validation purposes and should be left unchanged.