Many children in the HIE community undergo surgical procedures — sometimes several over the course of their lives. And yet, for most families, anesthesia can feel overwhelming or like a mystery. What exactly happens before, during, and after surgery? Who is on the team? And how do you prepare a child with HIE for what's coming?
In our recently streamed Q&A, Hope for HIE's Certified Child Life Specialist and Grief Counselor, Annie Gunning, sat down with Dr. Sami Horani, an anesthesiologist at UT Southwestern Medical Center in Dallas and the father of a two-year-old son named Kareem who has severe HIE. Together, they walked our community through the world of anesthesia.
Missed the stream? No worries. We took notes, and like any good partner, we're willing to share.
Anesthesiology is the medical practice of keeping patients safe, pain-free, and comfortable during surgical procedures. The anesthesia team monitors vital signs, manages medications, responds to any complications, and guides patients safely from the moment they go to sleep to the moment they wake up.
You may encounter three types of anesthesia providers:
Physicians who have completed four years of medical school and four years of specialized residency training.
Advanced practice nurses with critical care experience and specialized anesthesia training.
Non-physician providers with master's-level training, available in about 16–17 states.
In most settings, either an anesthesiologist manages the case independently, or an anesthesiologist supervises a CRNA or AA. Dr. Horani's tip: If you are speaking with a CRNA or AA during your pre-op conversations, always ask to meet the supervising anesthesiologist as well, so you know who is ultimately responsible for your child's care.
There are two main types your child may receive:
General anesthesia puts a child into a deep state of unconsciousness. Because the medications that produce this deep sleep can affect breathing, a breathing tube or other airway device is typically used to support the child's oxygen levels throughout the procedure.
Monitored anesthesia care (MAC), also called sedation or twilight sedation, involves a lighter level of consciousness. Children are typically breathing on their own with minimal support. This is used for shorter or less invasive procedures.
There are two primary methods for putting a child to sleep:
IV induction is the most common method. An IV is placed before medications are given, and the child is put to sleep using medication through the IV line.
Mask induction is used when a child cannot tolerate an IV placement beforehand — which is very common in children who are anxious or medically complex. In this case, anxiety medication may be given by mouth or G-tube first. The child is then taken to the OR and breathes in anesthesia gas through a mask until they fall asleep. The IV is placed after.
Dr. Horani noted that mask induction is fairly common in the pediatric population, and there is no need to worry if this is the approach used for your child.
Children with HIE often have a combination of complex needs that the anesthesia team will consider carefully. Dr. Horani shared the most common ones:
Epilepsy is common in the HIE population. The good news is that most anesthesia medications are actually seizure-suppressing, so there is typically not an elevated risk of seizure during surgery. However, the transition from unconsciousness to wakefulness can occasionally trigger seizures upon emergence in some children. It is important to share your child's full seizure history with the team — including what seizures look like, how frequent they are, and what medications your child takes.
A history of aspiration, lung infections, significant secretions, scoliosis, sleep apnea, or use of CPAP/BiPAP are all factors that can affect how anesthesia is managed. If your child has a tracheostomy, the team will want to know the size, age, and reason it was placed.
An important note: If your child has had an upper respiratory illness (a cold, congestion, cough) within six weeks of a scheduled elective surgery, contact the surgical team. This can affect airway reactivity during induction and emergence, and the procedure may need to be rescheduled.
Children with HIE are at higher risk of aspiration during anesthesia — when stomach contents enter the airway. If your child has significant reflux or low muscle tone, the team may choose to place a breathing tube rather than use lighter sedation, specifically to protect against this risk.
This is also why fasting before surgery matters. General guidelines are: clear liquids (water, pulp-free juice) up to 2 hours before; breast milk up to 4 hours before; solid food or G-tube feeds up to 8 hours before. Always confirm specific instructions with your surgical team.
Many children in the HIE community are what's called "difficult sticks" — meaning IV placement is challenging. If you know this is true for your child, you can ask ahead of time whether the hospital has an ultrasound IV team or whether the anesthesiologist is proficient in ultrasound-guided IV placement. This can significantly reduce the number of attempts and the stress involved.
Dr. Horani shared an important consideration many families may not think to ask about: where is the procedure being performed?
Ambulatory surgery centers are standalone facilities without the ability for overnight admission and with fewer resources on hand. For children with moderate to severe HIE and complex medical needs, having surgery performed at a hospital is typically the safer choice — so that if an overnight stay, extra support, or additional resources are needed, they are readily available.
No matter how much medical preparation goes into surgery day, the emotional experience of your child — and of you as a parent — matters enormously. Annie emphasized one word above everything else: preparation.
When children know what to expect, they cope better. That applies whether your child is verbal or nonverbal, developmentally typical or significantly delayed. You simply meet them where they are.
Starting with sensory preparation: The hospital environment is overwhelming. Bright lights, unfamiliar smells, cold surfaces, beeping machines — for children with sensory sensitivities, this can be especially distressing. You can begin preparing your child before surgery day by:
Communication for nonverbal or minimally verbal children: Bring your child's AAC device or communication board. Annie also recommends creating an "All About Me" sheet that includes your child's name, their favorite things, comfort items, what their body looks like when they are scared or in pain, and what helps them feel safe. Medical teams genuinely want this information — it helps them give better care.
The Support Spot app (free for all Hope for HIE families) includes coping plans that can also be helpful in these moments.
Comfort items: In most hospitals, your child can bring comfort items — a lovey, pacifier, blanket, favorite toy — to the pre-op area. These items are typically removed once your child is asleep in the OR and can be returned to them in the recovery room. Always check your specific hospital's policies.
One of the most common questions families have: Can I be with my child when they go to sleep?
The answer is: it depends. Parental presence during anesthesia induction varies by hospital, by anesthesiologist, and by the complexity of the procedure. It is generally less common at facilities that manage highly complex pediatric cases, and not permitted if the procedure is emergent, if the child is critically ill, or if the child is very young.
The most important thing is to ask ahead of time so you can prepare yourself and your child for whichever scenario will happen. Do not assume. Call the surgical team and speak with a nurse or provider who can give you a clear answer. This is also who you can speak with to ask if there is a Child Life Specialist available on the day of the procedure.
If you are not permitted to be present, Annie's role shines here. A Child Life Specialist would work with your child beforehand to establish trust and become a safe, familiar face. They would walk alongside them, keep them engaged and distracted during the separation, and return immediately after to check in with you as a parent.
How to prepare yourself: Even if you know it is coming, watching your child go off to sleep — or saying goodbye at a door — is hard. Give yourself grace. Ask the Child Life Specialist to help you know exactly what to say and do at the goodbye moment: "I'm going to give you a kiss right here, and I'll see you in a little bit. I love you." Having a plan, for your child and for yourself, makes it more manageable.
When your child wakes up from anesthesia, things may look different than when they went to sleep. They may have an IV in their hand (if induction was done by mask), oxygen in their nose, monitors attached, and they may be in an unfamiliar space.
Preparing your child for the recovery room in advance reduces fear and agitation. If they know ahead of time — "When you wake up, you'll have a little medicine straw in your hand, there will be some tape, and you'll have a little extra air in your nose" — they are far less likely to be distressed or try to pull things out. One family shared with Annie that their child didn't touch their IV post-surgery at all, because they had been prepared to expect it.
Tips for the recovery room environment:
For outpatient procedures, Dr. Horani shared that for shorter surgeries, most children are fairly awake and approaching their baseline within 30 minutes to an hour. Longer procedures will naturally take more time.
Both Dr. Horani and Annie offered a list of questions to bring to your surgical and anesthesia team:
When calling ahead, ask to speak with a nurse in the surgical office, rather than a scheduler. A nurse will be better equipped to answer clinical questions about medications, logistics, and your child's specific needs.
When asked what he would want families to know, Dr. Horani gave a response from his own lived experience.
He spoke about how different it is to read a medical record versus to meet a child. The diagnoses, the complexity, the list of challenges — and then you meet the child, and they are smiling. They have a personality. They are feisty and funny and full of light. He talked about his son Kareem, who at two years old has already shown more resilience than most people see in a lifetime.
His message was to trust yourself. You know your child better than anyone. If something feels off, say something. Don't let anyone tell you it's fine if your gut says otherwise. Ask questions and advocate. There are never too many questions when it comes to your child's safety.
The anesthesia team's job, and their goal, is to earn your trust quickly and give your child the best possible care.
The HIE community navigates more medical complexity than most families. Hope for HIE is here to help you walk into every appointment, every OR, and every recovery room a little more prepared and a little less alone.
Connect with Annie and the Hope for HIE Child Life program at HIE.Support.
Watch the full recording, along with our other Child Life Q&As, on Hope for HIE's YouTube channel under the Child Life Series playlist, or download our Key Takeaway resource for an at-a-glance look at the Q&A highlights!
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