If your baby did not receive enough oxygen during birth or even during fetal development, you may be starting to wonder about the long-term effects of severe hypoxic-ischemic encephalopathy—HIE for short—and what that means for your child’s future and quality of life. While HIE complications can be significant and challenging, families should know there are treatments and therapies available, and developments are being made all the time thanks to research into encephalitis, long-term effects of oxygen deprivation, and associated disorders like cerebral palsy.

What is Severe HIE?

Severe HIE is generally diagnosed as Stage III, the most severe, on the Sarnat scale. The Sarnat scale is one test that is used to diagnose babies with HIE as well as determine the severity. Physical exams, Apgar scores, and other diagnostic tools and imaging—such as EEG, ultrasound, and MRI, and checking cord blood gas levels—are likely to be factored in when confirming an HIE diagnosis.

Babies with Stage III HIE are considered to be in a “stuporous” stage, a term that might be hard for a parent to hear but that they will see reflected in their baby’s lack of muscular control and movement, absent reflexes, and poor bodily functions. Symptoms include:

• Unresponsive, coma-like state
• “Floppy” muscle tone all over
• No response to physical stimuli or Moro reflex
• Extreme difficulty with breathing
• Absent neonatal reflexes, like sucking/swallowing
• Vision problems
• Dilated, fixed, or unresponsive pupils
• Treatment-resistant seizures that begin/increase after 24-48 hours
• Irregular heartbeat
• Poor blood pressure
• Irregular brain waves

Symptoms of severe hypoxic brain injuries are often frightening for parents, but modern treatments of severe HIE can begin quickly, including a treatment known as neonatal therapeutic hypothermia.

This brain cooling treatment, while still relatively new in scientific terms, is the standard of immediate intervention for severe HIE in modern medical care. Before this time-sensitive treatment was known and available, only about a third of babies with severe HIE survived. Today, the survival rate of babies with severe HIE is estimated to be closer to 50 to 75 percent. By lowering babies’ body temperatures, the progression of brain damage is slowed, and the risk of disease progression is minimized.

What Are Common Long-Term Effects of Severe HIE?

Because HIE is a brain injury resulting from cerebral hypoxia, long-term effects, to some degree, might be unclear for years when it comes to some HIE side effects. For example, language development delays will not be clear until it is time for that developmental milestone. However, in cases of injuries caused by severe hypoxia, long-term effects generally do show up early on. For example, 41 percent of infants with severe HIE will have some visual abnormality within the first year of their lives.

The long-term effects of HIE may be understood as falling into four major categories:

1. Cognitive disorders: Common disorders include dyslexia, dysgraphia, inattention, cognitive impairment, learning deficits, executive functioning challenges, and social skills challenges.
2. Developmental delays: Common delays include autism, failure to thrive, and secondary microcephaly.
3. Neurological disorders: Common disorders include epilepsy, vision and hearing loss, strabismus, behavioral difficulties, and mood disorders.
4. Motor development issues: Common issues include dystonia, hyperkinesia, dysautonomia, and cerebral palsy.

However, just like kids with a history of HIE, no two cases of long-term effects look the same. What is most important is remembering that HIE itself is non-progressive, meaning that the brain injury that has resulted in these long-term effects will not worsen with time. That means that treatment of cerebral palsy and other side effects of HIE can only serve to improve your child’s condition, quality of life, and, hopefully, overall happiness.

How Can I Help with My Child’s Long-Term HIE Effects?

Parenting a child with medical conditions can be as stressful as it is rewarding. Researchers in Sweden interviewed 26 parents of children who spent time in the NICU being treated with therapeutic hypothermia to learn about the experiences of parents of children with severe HIE. What they found was an “emotional rollercoaster” often beginning with a traumatic birth experience, followed by the difficulties of being separated from their newborn, and finally followed by impressive adaptability. Children with significant medical needs may need immense support for their entire lives, and that means that parents need a lifetime of support, as well.

• Join a community: One of the first ways to begin helping yourself to help your child is to connect with a community of parents, caregivers, and even patients themselves. Knowing there is someone who shares your experience and can relate to the, as the Swedish researchers called it, emotional rollercoaster. Just as you can have someone to empathize with your lows, you will have someone to call on to celebrate the highs, too!
• Research treatments: Just as cooling treatments were once new, scientific developments and understanding of new treatment options for CP and other neurological disorders related to HIE are emerging all the time. By staying up to date on tried-and-true as well as experimental treatment options, you can at least be informed and prepared to ask questions at appointments.
• Maximize doctors’ appointments: Children with long-term effects of HIE often have additional physical disorders or complications, such as organ damage, along with their neurological symptoms. While it may seem like there are plenty of doctor’s appointments to go around, the truth is that your child has significant needs, and you need to make the most of the time you get with every health care provider you see.
• Prepare a care guide: A care guide is an invaluable tool not only for yourself but in the event that someone else needs to step in to help care for your child. While no one knows your child quite as well as you, home nurses, CNAs, specialists, and other future caregivers will be able to rely on the time and effort you have dedicated to providing the best possible way to help your child reach their potential.
• Plan for the future: Similar to a care guide, a life care plan is an important tool that can help you evaluate your child’s life-long needs, including financial concerns. Should your child’s injuries be the results of a preventable birth injury or other instance of medical negligence, you may choose to contact a lawyer about filing a lawsuit. A life care plan helps a judge or jury see just how expensive care is for a loved one with this level of care needs.

What Kind of Help Is Available for Paying for My Child’s Brain Hypoxia Recovery?

If your child was diagnosed with severe HIE and is now living with the long-term effects, you might be unsure what your next steps should be when you suspect medical malpractice contributed. HIE treatment and support can be costly, as can the added emotional stress of such an injury and its impact on your family’s quality of life.

The Cerebral Palsy Family Lawyers at Janet, Janet & Suggs have consulted with over 30,000 families nationwide, using our legal and medical experience to uncover the truth and recover the compensation families deserve. If your child suffered from medical malpractice that led to brain hypoxia injuries, contact the Cerebral Palsy Family Lawyers at Janet, Janet & Suggs today for a free, no-obligation consultation.

Reviewed by:
Claire Surles, RN
Registered Nurse

Claire comes to JJS after a 10-year career as a labor and delivery nurse. She dedicated her hospital efforts to advocating for families, providing the safest birthing environment possible as Newborn Admission Nurse at UMMC St. Joseph Medical Center in Towson, Maryland. Her passion for helping those who experienced losses at any stage of gestation led to her appointment as Coordinator of the hospital’s ROOTS perinatal loss program. READ FULL BIO

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