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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Pediatric Ophthalmology

Building Your Care Team

At a Glance

Managing Microphthalmia, Anophthalmia, and Coloboma (MAC) requires a multidisciplinary care team. Core specialists typically include a pediatric ophthalmologist, ocularist, oculoplastic surgeon, and clinical geneticist who coordinate vision preservation and prosthetic fitting.

Because Microphthalmia, Anophthalmia, and Coloboma (MAC) often involve multiple organ systems, care cannot be managed by a single doctor. Instead, you will need to assemble a multidisciplinary team (MDT)—a group of specialists who coordinate their expertise to treat the whole patient [1][2].

While management pathways are not yet standardized internationally, a collaborative approach between surgical, prosthetic, vision rehab, and genetic experts is considered the gold standard for improving outcomes [1][3].

The Core Specialists

Your team will likely center around these primary providers:

  • Pediatric Ophthalmologist (or Retina Specialist): The “lead” for eye health. They monitor vision development and check the internal structures of the eye for complications like retinal detachment [1][4].
  • Ocularist: A specialist who designs, fits, and maintains custom ocular prostheses (artificial eyes) and conformers. Their goal is to restore the socket’s appearance and function for those with Anophthalmia or severe Microphthalmia [5][6].
  • Oculoplastic Surgeon: A surgeon who specializes in the structures around the eye. They may perform surgery to reconstruct the socket, manage cysts, or place orbital implants if non-surgical expansion is not enough [5][7].
  • Clinical Geneticist: They interpret genetic testing (like Whole Exome Sequencing) to determine if the MAC is isolated or part of a syndrome, which helps predict other health needs [1][8].
  • Vision Rehabilitation Team: This group includes Teachers of the Visually Impaired (TVI), low-vision specialists, and orientation and mobility experts who help optimize functional vision [1].

Ocularist vs. Oculoplastic Surgeon

For those requiring prosthetics, it is important to understand the different roles these two specialists play.

  • The Ocularist is like a specialized architect and artist; they focus on the external fit, volume, and look of the prosthetic [5].
  • The Oculoplastic Surgeon is the “structural engineer”; they address the internal anatomy of the socket, eyelids, and tear ducts through medical procedures [5][9].
  • Successful treatment requires these two to work in close collaboration to ensure the prosthetic is “compatible” with the surgical site [10][11].

Your Appointment “Go-Bag”

Specialists often work in different hospital systems. To ensure care is coordinated, you should bring physical copies of the following artifacts to every new consultation:

  1. Genetic Test Results: A copy of the full lab report, not just a summary [1].
  2. Imaging Discs: A CD or digital link containing the actual images of any Brain or Orbital MRIs (the written report is helpful, but the specialist often needs to see the raw images) [12].
  3. Specialist Notes: Recent clinical notes from the pediatrician, cardiologist, or any other specialists involved in systemic care [13].
  4. A “Question List”: A written list of your concerns to ensure shared decision-making and to make the most of your consultation time [14][15].

Vetting Your Team

When meeting a new specialist, you have the right to ensure they are a good fit. Consider asking:

  • “How do you coordinate care with the ocularist/surgeon/low-vision specialist?” [5]
  • “What is your experience with patients who have this specific genetic diagnosis?” [1]
  • “What is the long-term plan for managing vision or socket volume as the patient grows?” [16]

Common questions in this guide

Which specialists should be on a MAC care team?
A multidisciplinary care team for MAC typically includes a pediatric ophthalmologist, an ocularist, an oculoplastic surgeon, a clinical geneticist, and vision rehabilitation specialists. These experts work together to manage eye health, prosthetic fitting, and overall development.
What is the difference between an ocularist and an oculoplastic surgeon?
An ocularist focuses on the external fit, volume, and visual design of an artificial eye or conformer. An oculoplastic surgeon addresses the internal anatomy, performing necessary medical procedures on the socket, eyelids, and tear ducts.
What should I bring to a new specialist appointment for MAC?
You should bring complete physical copies of genetic test lab reports, CDs or digital links containing raw MRI images, and recent clinical notes from other specialists. Having a prepared list of questions will also help you make the most of your consultation.
When is surgery needed for socket expansion in anophthalmia or microphthalmia?
Surgical options, such as orbital implants or dermis-fat grafts, are typically considered when non-surgical socket expansion using conformers is not enough to adequately prepare the socket for a prosthetic. Your oculoplastic surgeon will determine if and when surgery is necessary.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many other patients with the MAC spectrum have you treated in your practice, and how often do you communicate with the rest of the care team?
  2. 2.To the Ocularist: What is your experience in managing socket expansion, and what is your protocol if a conformer falls out at home?
  3. 3.To the Surgeon: Under what circumstances would you move from non-surgical conformers to surgical expanders or dermis-fat grafts?
  4. 4.Can we schedule a care coordination meeting or call between the primary ophthalmologist, the geneticist, and the ocularist to align on the treatment timeline?

Questions For You

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References

References (16)
  1. 1

    Real-world clinical and molecular management of 50 prospective patients with microphthalmia, anophthalmia and/or ocular coloboma.

    Harding P, Gore S, Malka S, et al.

    The British journal of ophthalmology 2023; (107(12)):1925-1935 doi:10.1136/bjo-2022-321991.

    PMID: 36192130
  2. 2

    Management of anophthalmia, microphthalmia and coloboma in the newborn, shared care between neonatologist and ophthalmologist: a literature review.

    Russo M, Palmeri S, Zucconi A, et al.

    Italian journal of pediatrics 2025; (51(1)):65 doi:10.1186/s13052-025-01882-3.

    PMID: 40038803
  3. 3

    Next-Generation Sequencing in Congenital Eye Malformations: Identification of Genetic Causes and Comparison of Different Panel-Based Diagnostic Strategies.

    Neuhann L, Laner A, Holinski-Feder E, Neuhann T

    International journal of molecular sciences 2025; (26(20)) doi:10.3390/ijms26209854.

    PMID: 41155148
  4. 4

    [Anophthalmia and microphthalmia requires multidisciplinary care. Many of the children also have other medical problems].

    Jugård Y, Odersjö M, Topa A, et al.

    Lakartidningen 2015; (112()).

    PMID: 26173131
  5. 5

    [Ocular prosthetics in children-Possibilities and challenges].

    Schittkowski MP, Weiss N

    Die Ophthalmologie 2023; (120(2)):139-149 doi:10.1007/s00347-022-01794-1.

    PMID: 36662298
  6. 6

    Automatic data-driven design and 3D printing of custom ocular prostheses.

    Reinhard J, Urban P, Bell S, et al.

    Nature communications 2024; (15(1)):1360 doi:10.1038/s41467-024-45345-5.

    PMID: 38413561
  7. 7

    Management of post enucleation socket syndrome patients - A retrospective study.

    Calluaud G, Amelot A, Kulker D, et al.

    Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery 2022; (50(2)):163-169 doi:10.1016/j.jcms.2021.12.007.

    PMID: 35042651
  8. 8

    Molecular investigation in individuals with orofacial clefts and microphthalmia-anophthalmia-coloboma spectrum.

    Atique Tacla M, de Mello Copelli M, Pairet E, et al.

    European journal of human genetics : EJHG 2024; (32(10)):1257-1266 doi:10.1038/s41431-023-01488-5.

    PMID: 37932364
  9. 9

    [Custom-made artificial parts for improving functional and cosmetic results of ocular prosthetics].

    Verigo EN, Filatova IA, Sadovskaya EP, Pryakhina IA

    Vestnik oftalmologii 2015; (131(6)):43-50 doi:10.17116/oftalma2015131643-50.

    PMID: 26977726
  10. 10

    [Rehabilitation of Anophthalmic Patients with Prosthetic Eyes in Germany Today - Supply Possibilities, Daily Use, Complications and Psychological Aspects].

    Rokohl AC, Mor JM, Trester M, et al.

    Klinische Monatsblatter fur Augenheilkunde 2019; (236(1)):54-62 doi:10.1055/a-0764-4974.

    PMID: 30567009
  11. 11

    Anxiety and depression in patients wearing prosthetic eyes.

    Heindl LM, Trester M, Guo Y, et al.

    Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie 2021; (259(2)):495-503 doi:10.1007/s00417-020-04908-0.

    PMID: 32870372
  12. 12

    Challenges nurses face in providing care for patients with juvenile idiopathic arthritis.

    Fusama M, Nakahara H, Miyamae T, et al.

    Modern rheumatology 2024; (35(1)):185-193 doi:10.1093/mr/roae041.

    PMID: 38722031
  13. 13

    A Practical Multidisciplinary Approach to Identifying Interstitial Lung Disease in Systemic Autoimmune Rheumatic Diseases: A Clinician's Narrative Review.

    Biciusca V, Rosu A, Stan SI, et al.

    Diagnostics (Basel, Switzerland) 2024; (14(23)) doi:10.3390/diagnostics14232674.

    PMID: 39682582
  14. 14

    Challenges nurses face in providing care to older patients with rheumatoid arthritis: A qualitative study.

    Fusama M, Nakahara H, Urata Y, et al.

    Modern rheumatology 2025; (35(2)):256-264 doi:10.1093/mr/roae087.

    PMID: 39233450
  15. 15

    Challenges faced by nurses engaged in rheumatology care in Japan.

    Fusama M, Nakahara H, Gregg M, et al.

    Modern rheumatology 2024; (34(4)):711-719 doi:10.1093/mr/road079.

    PMID: 37540545
  16. 16

    Rehabilitation of pediatric retinoblastoma patients with ocular prostheses and their subsequent modifications: A 15-year retrospective study.

    Legg LR, Ahmed ZU, Solano AK, et al.

    Journal of prosthodontics : official journal of the American College of Prosthodontists 2024; (33(1)):12-17 doi:10.1111/jopr.13681.

    PMID: 36951218

This guide to building a multidisciplinary MAC care team is for educational purposes only. Always consult your primary care physician or pediatric ophthalmologist to coordinate specific medical and surgical care.

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