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PubMed This is a summary of 19 peer-reviewed journal articles Updated
Neonatology

Building Your Care Team: Specialists and Collaboration

At a Glance

Because neonatal erythroderma, autoinflammation, and very-early-onset inflammatory bowel disease are rare and complex, babies often need a coordinated team of newborn, immune, gut, skin, genetics, infection, and transplant specialists, supported by complete shared records.

Managing a newborn with the triad of erythroderma, autoinflammation, and VEO-IBD is too complex for any one doctor. Your baby requires a “multidisciplinary team”—a group of high-level specialists who must collaborate closely to solve the genetic puzzle and provide daily care [1][2].

Because these conditions are ultra-rare, this complete team is typically found at major academic children’s hospitals. Depending on the case, your local hospital may consult remotely with experts, or you may eventually discuss a transfer to a “quaternary” center—a highly specialized hospital offering advanced therapies like HSCT that are not available at standard centers [3][4].

Your Flexible Specialist Roster

Each member of the team looks at your baby’s body through a different lens. While not every child needs every specialist, the team may include:

  • Neonatologist: The physician in the NICU who manages your baby’s minute-to-minute stability [5].
  • Pediatric Immunologist: The expert determining if your baby has a primary immunodeficiency and directing immune-based therapies [5][6].
  • Pediatric Gastroenterologist: For these babies, expertise in Monogenic VEO-IBD is vital, as it behaves differently than adult ulcerative colitis [2][7].
  • Pediatric Dermatologist: The expert who manages the complex daily care needed to keep the skin barrier intact [1].
  • Medical Geneticist: The specialist who orders and interprets complex DNA tests, such as Whole Exome Sequencing (WES) [2][8].
  • Pediatric Pathologist: The doctor looking at biopsies under a microscope to find specific patterns of immune attack [9].
  • Infectious Disease (ID) and Transplant Teams: Essential for managing sepsis risks and, if indicated, guiding stem cell transplants.
  • Allied Health and Support: Dietitians, clinical pharmacists, genetic counselors, social workers, and specialized nurses form the backbone of daily care and family support.

Essential Records to Gather

If your baby is being transferred or if you are seeking a second opinion, having a complete set of records is critical. Request authorized record transfers from the hospital, but also keep your own secure personal copies of the following [10][11]:

  1. Genetic Test Reports: The full, detailed report from the lab, including any “Variants of Uncertain Significance” (VUS) [12][11].
  2. Immune Phenotype Trends: A dated log of white blood cell counts, T-cell subsets, and immunoglobulin levels [13][14].
  3. Pathology Slides: If a biopsy was done, the new hospital will often want to see the actual “slides” of tissue [9].
  4. Endoscopy and Operative Reports: Detailed notes from any internal procedures [15].
  5. Vaccination and Infection History: A list of every vaccine given and the results of every culture or viral test [10][16].
  6. Nutrition and Medication Logs: Exactly what type of IV nutrition (TPN) or formula your baby has received [10].

The “Shared Care” Model

In the best-case scenario, your doctors will hold regular multidisciplinary case reviews to discuss your baby’s case [17][18]. This ensures that a change in the skin treatment doesn’t accidentally interfere with the gut treatment [3].

As a parent, you are the most consistent member of this team. Your observations of your baby’s daily changes are essential data points for the specialists [19][17].

Common questions in this guide

Which specialists should care for a newborn with erythroderma, autoinflammation, and VEO-IBD?
Care is usually coordinated by a neonatologist, pediatric immunologist, and pediatric gastroenterologist, with pediatric dermatology and medical genetics involved early. Pediatric pathology, infectious disease, transplant specialists, nurses, dietitians, pharmacists, genetic counselors, and social workers may also be needed. The exact team depends on your baby's test results and clinical needs.
Why might my baby need a major academic or quaternary children's hospital?
These conditions are extremely rare and may require experts in immune disorders, genetic testing, and very-early-onset inflammatory bowel disease. A quaternary center may offer advanced therapies such as hematopoietic stem cell transplantation that are not available at every hospital. Your local team may consult remotely or arrange a transfer if needed.
What records should I bring for a second opinion or hospital transfer?
Keep copies of full genetic reports, including variants of uncertain significance, and dated immune test results such as blood counts, T-cell subsets, and immunoglobulin levels. Also request biopsy slides, endoscopy and operative reports, vaccine and infection records, and detailed nutrition and medication logs. Ask hospitals to transfer records directly, but keep a secure personal copy.
How are my baby's specialists supposed to coordinate treatment?
Ask whether the hospital holds regular multidisciplinary case reviews and assigns a lead coordinator. Shared updates help the immune, skin, gastrointestinal, infection, and transplant teams adjust plans together. This reduces the chance that a change in one part of care conflicts with another.
How can parents help manage care for this rare condition?
Parents are an important source of day-to-day information because they see changes between appointments. Record symptoms, treatments, test results, feeding or nutrition changes, and questions in one secure folder or digital log. Ask for a communication plan that states who will provide updates and how often.

Get notified when new evidence is published on Neonatal erythroderma-autoinflammation-inflammatory bowel disease syndrome.

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References

References (19)
  1. 1

    Proposal of Slovenian guidelines for the diagnosis of neonatal erythroderma with a case report of Omenn syndrome.

    Starbek Zorko M, Štublar Krašovec A, Dragoš V

    Acta dermatovenerologica Alpina, Pannonica, et Adriatica 2023; (32(2)):57-61.

    PMID: 37365893
  2. 2

    Genomic diagnosis and care co-ordination for monogenic inflammatory bowel disease in children and adults: consensus guideline on behalf of the British Society of Gastroenterology and British Society of Paediatric Gastroenterology, Hepatology and Nutrition.

    Kammermeier J, Lamb CA, Jones KDJ, et al.

    The lancet. Gastroenterology & hepatology 2023; (8(3)):271-286 doi:10.1016/S2468-1253(22)00337-5.

    PMID: 36634696
  3. 3

    Feasibility of Ultra-Rapid Exome Sequencing in Critically Ill Infants and Children With Suspected Monogenic Conditions in the Australian Public Health Care System.

    , Lunke S, Eggers S, et al.

    JAMA 2020; (323(24)):2503-2511 doi:10.1001/jama.2020.7671.

    PMID: 32573669
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    Implementation of rapid genomic sequencing in safety-net neonatal intensive care units: protocol for the VIrtual GenOme CenteR (VIGOR) proof-of-concept study.

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    BMJ open 2024; (14(2)):e080529 doi:10.1136/bmjopen-2023-080529.

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    Inborn Errors of Immunity in Early Childhood: Essential Insights for the Neonatologist.

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    Tricho-Hepato-Enteric Syndromic Immunodeficiency: Clinical Spectrum, Pathobiology, and Emerging Therapies.

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    Diagnostic Approach to Monogenic Inflammatory Bowel Disease in Clinical Practice: A Ten-Year Multicentric Experience.

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    PMID: 31375816
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    [The Great Imposter: Three Cases of Inflammatory Bowel Disease Associated with Innate Immune Defects].

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    Pattern-based Histologic Approach in Very Early Onset IBD: Main Features and Differential Diagnosis.

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    PMID: 34620740
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    Disseminated BCG infection and rotavirus enteritis in an infant with severe immunodeficiency: a causal association study.

    Cai J, Li S, Xu J, et al.

    Frontiers in public health 2025; (13()):1695162 doi:10.3389/fpubh.2025.1695162.

    PMID: 41426715
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    Enhanced clinical decision-making to optimize targeted gene panel testing for inborn errors of immunity.

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    Reference intervals for lymphocyte subsets in preterm and term neonates without immune defects.

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    Case Report: Infant with vaccine-associated paralytic poliomyelitis unveils global disparities in care for inborn errors of immunity.

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    Barriers to and Facilitators of End-of-Life Decision Making by Neonatologists and Neonatal Nurses in Neonates: A Qualitative Study.

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This page provides general information about coordinating care for a newborn with this rare condition and does not constitute medical advice. Your baby's treating team should guide testing, treatment, transfers, and transplant decisions.

Guide contents Neonatal erythroderma-autoinflammation-inflammatory bowel disease syndrome
Research & Literature
05 Targeted Treatment 07 Long-Term Care