Pediatric Anesthesiology

Building Your Care Team

At a Glance

Children with Hallermann-Streiff Syndrome require a coordinated team including an anesthesiologist, pulmonologist, ophthalmologist, and craniofacial surgeon. Parents should maintain a medical binder and ensure specialists communicate to manage complex airway, eye, and feeding needs safely.

Because Hallermann-Streiff Syndrome (HSS) affects several different parts of the body at once, your child will need a large team of experts. Because HSS is so rare, you may find that you are the most informed member of the team regarding your child’s specific history ^[1]^[2].

Your Essential Roster

While every child’s needs are different, the following specialists typically form the core “standard of care” team for HSS:

Pediatric Anesthesiologist: A critical, life-saving member of the team. Due to the small jaw and narrow airway, placing a breathing tube is exceptionally difficult. All procedures must be done by specialists trained in “difficult airways” ^[3].
Pediatric Pulmonologist / Sleep Medicine: This specialist manages your baby’s breathing. They will oversee sleep studies and prescribe treatments like CPAP to manage obstructive sleep apnea ^[3].
Pediatric Ophthalmologist: Essential for managing the “cardinal” eye features of HSS. They monitor for cataracts and glaucoma and perform surgeries to protect your child’s vision ^[4]^[5].
Craniofacial Surgeon: This surgeon (often a plastic or oral/maxillofacial surgeon) monitors the growth of the skull and jaw. They perform procedures like mandibular distraction to open the airway ^[6]^[7].
Medical Geneticist: They help confirm the diagnosis and provide the most up-to-date information on the genetics of HSS, such as the CHD6 gene ^[8]^[9].
Pediatric Dentist & Orthodontist: These specialists work together to manage missing teeth, unusual tooth shapes, and the growth of the jaws over many years ^[10]^[11].
Feeding Specialist / Gastroenterologist: Often an occupational therapist or speech therapist, along with a GI doctor, they help ensure your baby can gain weight safely, whether through specialized bottles or life-saving tube feeding (NG or G-tube) ^[12].

Coordinating the Care “Marathon”

One of the biggest challenges for parents is keeping all these specialists on the same page. Research shows that multidisciplinary care—where specialists talk to one another—leads to the best outcomes ^[10]^[13].

Your Diagnostic “Go-Bag”

When you visit a new specialist, having certain documents ready can help them provide better care. Consider keeping a digital or physical binder containing:

Sleep Study Results: Specifically the “AHI” (apnea-hypopnea index) which tells them the severity of the sleep apnea ^[3].
Ocular Biometry: Measurements like “axial length” and corneal diameter, which are vital for eye surgeons ^[4]^[14].
Genetic Reports: Any testing that has been done for CHD6 or GJA1 ^[8]^[9].
Growth Charts: To show the feeding specialist how your baby is gaining weight.

Evaluating Expertise

It is okay to “interview” your specialists. You are looking for a team that is not only skilled but also willing to learn about HSS alongside you. You might ask:

“Are you willing to consult with other specialists across the country who have seen more HSS cases?”
“Do you have a dedicated nurse or coordinator who helps manage appointments and records?”
“How do you handle the unique anesthesia risks for a child with a small jaw and narrow airway?”

While managing a large medical team is a significant job, these specialists are your partners in ensuring your child leads a healthy and meaningful life.

Common questions in this guide

What doctors do I need for a child with Hallermann-Streiff Syndrome?

Your child will typically need a multidisciplinary team including a pediatric anesthesiologist, pulmonologist, ophthalmologist, and craniofacial surgeon. Other essential members often include a medical geneticist, pediatric dentist, orthodontist, and a feeding specialist or gastroenterologist.

Why is a pediatric anesthesiologist so important for children with HSS?

Children with Hallermann-Streiff Syndrome often have a very small jaw and a narrow airway, which makes placing a breathing tube for surgeries exceptionally difficult. All procedures require an anesthesiologist specifically trained in managing difficult airways to keep your child safe.

How can I coordinate care among so many different HSS specialists?

Creating a medical 'go-bag' or binder is one of the best ways to keep specialists aligned. Include essential documents like sleep study results, ocular biometry measurements, genetic reports, and growth charts to ensure every doctor has the latest data during visits.

What questions should I ask when interviewing a new doctor for my child?

You should ask if they have experience with complex craniofacial conditions and if they are willing to consult with outside experts who have seen more HSS cases. It is also important to ask how they plan to communicate with your child's other specialists and manage unique anesthesia risks.

Curated prompts to bring to your next appointment.

1.Do you have experience treating other children with Hallermann-Streiff Syndrome or similar complex craniofacial conditions?
2.How do you communicate and coordinate with my child's other specialists, such as the eye surgeon or the pulmonologist?
3.If an urgent issue arises with my child's breathing or vision, what is the best way to reach your team quickly?
4.Can you recommend a primary care pediatrician who is comfortable managing a child with a rare, multisystem syndrome?
5.How will you help us transition our child's care from infancy into childhood and eventually adulthood?

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References (14)

1
Prevalence of Hallermann-Streiff syndrome in a Japanese pediatric population.
Numabe H, Kosaki K
Pediatrics international : official journal of the Japan Pediatric Society 2021; (63(4)):474-475 doi:10.1111/ped.14434.
PMID: 33638210
2
Diagnosis, Early Care, and Treatment of Hallermann-Streiff Syndrome: A Review of the Literature.
Godzieba A, Smektała T, Dowgierd K, et al.
Pediatric annals 2021; (50(5)):e227-e231 doi:10.3928/19382359-20210415-01.
PMID: 34044702
3
Long term NIV in an infant with Hallermann-Streiff syndrome: A case report and overview of respiratory morbidity.
Guerin S, Blanchon S, de Halleux Q, et al.
Frontiers in pediatrics 2022; (10()):1039964 doi:10.3389/fped.2022.1039964.
PMID: 36405833
4
Hallermann-Streiff syndrome diagnosed in the seventh decade of life.
Shimada A, Takayanagi Y, Ichioka S, et al.
American journal of ophthalmology case reports 2022; (27()):101595 doi:10.1016/j.ajoc.2022.101595.
PMID: 35651595
5
Hallermann-Streiff Syndrome in Concordant Monozygotic Twins With Congenital Cataracts, Exudative Retinal Detachments, and One Case of Corneal Perforation Requiring Keratoplasty.
Sims DT, Mattson NR, Huang LC, et al.
Cornea 2023; (42(7)):899-902 doi:10.1097/ICO.0000000000003286.
PMID: 37088900
6
Efficacy and Complications of Mandibular Distraction Osteogenesis for Airway Obstruction in the Robin Sequence Population: A Comprehensive Literature Review.
Chocron Y, Barone N, Zammit D, Gilardino MS
The Journal of craniofacial surgery 2022; (33(6)):1739-1744 doi:10.1097/SCS.0000000000008611.
PMID: 35258012
7
Orthodontic and Surgical Principles for Distraction Osteogenesis in Children with Pierre-Robin Sequence.
Yen S, Gaal A, Smith KS
Oral and maxillofacial surgery clinics of North America 2020; (32(2)):283-295 doi:10.1016/j.coms.2020.01.012.
PMID: 32247440
8
Hallermann-Streiff syndrome: A missing molecular link for a highly recognizable syndrome.
Schmidt J, Wollnik B
American journal of medical genetics. Part C, Seminars in medical genetics 2018; (178(4)):398-406 doi:10.1002/ajmg.c.31668.
PMID: 30580479
9
Overarching control of autophagy and DNA damage response by CHD6 revealed by modeling a rare human pathology.
Kargapolova Y, Rehimi R, Kayserili H, et al.
Nature communications 2021; (12(1)):3014 doi:10.1038/s41467-021-23327-1.
PMID: 34021162
10
Implant-Supported Maxillary and Mandibular Rehabilitation in a Patient With Hallermann-Streiff Syndrome.
von Marttens A, Perilla A, Wen S, et al.
The Journal of craniofacial surgery 2021; (32(1)):e20-e23 doi:10.1097/SCS.0000000000006832.
PMID: 33186282
11
Combined orthodontic and surgical treatment for a patient with Hallermann-Streiff-Francois syndrome, severe obstructive sleep apnea, and history of antiresorptive medication.
Sondeijker CFW, Apperloo RC, Kalaykova SI, et al.
American journal of orthodontics and dentofacial orthopedics : official publication of the American Association of Orthodontists, its constituent societies, and the American Board of Orthodontics 2021; (159(1)):97-107 doi:10.1016/j.ajodo.2019.06.026.
PMID: 33189488
12
Feeding and reflux in children after mandibular distraction osteogenesis for micrognathia: A systematic review.
Breik O, Umapathysivam K, Tivey D, Anderson P
International journal of pediatric otorhinolaryngology 2016; (85()):128-35.
PMID: 27240511
13
Clinical efficacy of combined orthodontic and implant-supported prosthodontic treatment for dentition defects with dentofacial deformities.
Yang J, Sheng H, Wei R
Medicine 2026; (105(5)):e47506 doi:10.1097/MD.0000000000047506.
PMID: 41630342
14
Axial length measurement failure rates using optical biometry based on swept-source OCT in cataractous eyes.
Tañá-Rivero P, Tañá-Sanz S, Pastor-Pascual F, et al.
Expert review of medical devices 2022; (19(8)):633-640 doi:10.1080/17434440.2022.2118047.
PMID: 36062739

This page provides general guidance on building a care team for Hallermann-Streiff Syndrome. Always consult with your primary pediatrician and specialists to tailor a medical plan to your child's specific needs.

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