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PubMed This is a summary of 24 peer-reviewed journal articles Updated
Pediatric Neurology

Building Your Care Team

At a Glance

Caring for a child with hydranencephaly requires a multidisciplinary medical team to manage complex neurological, hormonal, and physical needs. Essential specialists include a pediatric neurologist, neurosurgeon, endocrinologist, and palliative care experts to support your child's quality of life.

Caring for a child with hydranencephaly is a complex undertaking that requires a dedicated team of experts. Because this condition affects multiple systems in the body—including the brain, the hormone-producing glands, and physical movement—no single doctor can manage it alone [1][2]. Building a multidisciplinary team ensures that every aspect of your child’s health and your family’s well-being is supported [3][4].

Your Medical Specialist Team

Each member of your medical team brings a specific set of skills to help manage your child’s symptoms and improve their quality of life.

  • Pediatric Neurologist: This specialist is often the “anchor” of the team. They focus on managing epilepsy (seizures) and monitoring your child’s overall neurological development [5][6].
  • Pediatric Neurosurgeon: If your child has macrocephaly (enlarged head size), the neurosurgeon will manage the fluid levels. They perform procedures like ventriculoperitoneal (VP) shunts or choroid plexus cauterization (CPC) to relieve pressure [7][8].
  • Pediatric Endocrinologist: Since hydranencephaly can affect the hypothalamus and pituitary gland, this specialist monitors for “hidden” conditions like central diabetes insipidus or thyroid issues and prescribes hormone replacement therapy if needed [9][10].
  • Pediatric Palliative Care Specialist: Contrary to common belief, palliative care is not just for the end of life. These specialists are quality-of-life partners who help manage complex symptoms like pain or irritability and support your family in making difficult decisions [11][12].

Support and Coordination Roles

In addition to medical doctors, other professionals play a vital role in your child’s daily care and your family’s stability.

  • Medical Social Worker: Social workers are essential advocates. They help you navigate the healthcare system, find financial resources, coordinate home nursing, and provide emotional counseling for the whole family [13][14].
  • Therapy Team (PT/OT/SLP): Physical therapists (PT) help manage muscle stiffness (spasticity), while occupational therapists (OT) and speech-language pathologists (SLP/feeding specialists) can help with safe feeding techniques and positioning [15][13].
  • Care Coordinator: Often a nurse or social worker, this person helps manage the “logistics”—scheduling appointments, ordering supplies, and ensuring all the different doctors are talking to one another [16][17].

Navigating Complex Decisions

Sometimes, families and medical teams face very difficult choices about which treatments are “right” for a child. In these moments, you can request a Clinical Ethics Consultation.

An ethics team does not make decisions for you. Instead, they provide a “moral space” where everyone can talk openly [18][19]. They help clarify the goals of care, resolve disagreements between family members or doctors, and ensure that the final decision honors your child’s dignity and your family’s values [20][21]. Using these services is a proactive way to find peace and clarity during an incredibly stressful time [22][23].

Remember, you are the most important member of this team. You are the expert on your child, and your voice is central to every plan the team creates [24][3].

Common questions in this guide

Who should coordinate my child's hydranencephaly care team?
While a pediatric neurologist often anchors the medical side of care, a dedicated care coordinator or medical social worker usually handles the daily logistics. They help schedule appointments and ensure that all the different doctors communicate effectively with one another.
Why is a palliative care specialist recommended for hydranencephaly?
Palliative care is focused on acting as a quality-of-life partner, not just end-of-life care. These specialists help manage complex symptoms like pain or irritability and provide crucial support to your family when making difficult medical decisions.
Why might my child need to see a pediatric endocrinologist?
Hydranencephaly can impact the hypothalamus and pituitary gland, potentially causing hidden conditions like central diabetes insipidus or thyroid problems. An endocrinologist monitors these specific hormone levels and prescribes replacement therapy if necessary.
What role do therapists play in managing hydranencephaly?
Physical therapists help manage muscle stiffness and spasticity. Occupational therapists and speech-language pathologists focus on safe feeding techniques, swallowing, and proper positioning to improve daily comfort.
How can a clinical ethics consultation help our family?
A clinical ethics team provides a neutral space for you and the doctors to openly discuss complex care choices. They help clarify your goals of care, resolve any disagreements, and ensure that all decisions honor your child's dignity and your family's values.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who will be the 'point person' or main coordinator for my child's care among all these specialists?
  2. 2.How do the different members of the team communicate with each other to ensure my child's care is consistent?
  3. 3.Can we schedule a 'goals of care' meeting with the palliative care team and our other specialists?
  4. 4.What is the best way for me to reach the team if I have a question about a new symptom or a medication change?
  5. 5.Does the hospital offer clinical ethics consultations if our family faces a difficult decision about surgery or intervention?
  6. 6.Which specialists do we need to see most frequently, and which ones are for 'as needed' issues?

Questions For You

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

References

References (24)
  1. 1

    Hydranencephaly: Clinical Features and Survivorship in a Retrospective Cohort.

    Omar AT, Manalo MKA, Zuniega RRA, et al.

    World neurosurgery 2020; (144()):e589-e596 doi:10.1016/j.wneu.2020.09.029.

    PMID: 32916366
  2. 2

    A case of testicular cancer in a long-term hydranencephaly survivor with undescended testes.

    Hirata W, Shinojima T, Yokota K, et al.

    IJU case reports 2024; (7(3)):266-269 doi:10.1002/iju5.12720.

    PMID: 38686073
  3. 3

    [Supporting neurodegenerative disorders at home: The role and challenges of the gerontology care assistant].

    Desforges S

    Soins; la revue de reference infirmiere 2026; (71(902)):40-44 doi:10.1016/j.soin.2025.11.009.

    PMID: 41521046
  4. 4

    Integrated Care model: Transition from acute to chronic care.

    Ghiyasvandian S, Shahsavari H, Matourypour P, Golestannejad MR

    Revista brasileira de enfermagem 2021; (74(suppl 5)):e20200910 doi:10.1590/0034-7167-2020-0910.

    PMID: 34105697
  5. 5

    Hydranencephaly: exploring the role of CT features in the diagnosis of 22 cases.

    Zhang H, Manda P, Sun T, et al.

    Malawi medical journal : the journal of Medical Association of Malawi 2024; (36(5)):313-317 doi:10.4314/mmj.v36i5.4.

    PMID: 40018021
  6. 6

    Expanding the phenotype of COL4A1-related disorders-Four novel variants.

    Nishimura N, Kumaki T, Murakami H, et al.

    Brain & development 2020; (42(9)):639-645 doi:10.1016/j.braindev.2020.05.009.

    PMID: 32565002
  7. 7

    Management and problems of prolonged survival with hydranencephaly in the modern treatment era.

    Akutsu N, Azumi M, Koyama J, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2020; (36(6)):1239-1243 doi:10.1007/s00381-019-04479-4.

    PMID: 31897631
  8. 8

    Hydranencephaly treatments: retrospective case series and review of the literature.

    Thiong'o GM, Ferson SS, Albright AL

    Journal of neurosurgery. Pediatrics 2020; (26(3)):228-231.

    PMID: 32413862
  9. 9

    Hydranencephaly complicated by central diabetes insipidus: report of two cases and systematic review of literature.

    Omar AT, Khu KJO

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2019; (35(7)):1165-1171 doi:10.1007/s00381-019-04137-9.

    PMID: 30929071
  10. 10

    Hydranencephaly in a newborn due to occupational toluene exposure during pregnancy: a case report.

    Aydın B, Botan E, Gülensoy B, Akyol S

    Acute and critical care 2024; (39(4)):647-651 doi:10.4266/acc.2021.01081.

    PMID: 35977900
  11. 11

    Care management trajectories of infants with life-limiting conditions who died before 12 months of age; a retrospective patient health record review.

    Iten R, O'Connor M, Cuddeford L, Gill FJ

    Journal of pediatric nursing 2023; (70()):e22-e31 doi:10.1016/j.pedn.2022.11.014.

    PMID: 36463014
  12. 12

    Pediatric palliative care in the intensive care unit and questions of quality: a review of the determinants and mechanisms of high-quality palliative care in the pediatric intensive care unit (PICU).

    Short SR, Thienprayoon R

    Translational pediatrics 2018; (7(4)):326-343 doi:10.21037/tp.2018.09.11.

    PMID: 30460185
  13. 13

    The Role of the Medical Social Worker in a Pediatric Aero-Digestive Program.

    Fonash A

    Current problems in pediatric and adolescent health care 2018; (48(4)):111-112 doi:10.1016/j.cppeds.2018.03.001.

    PMID: 29566989
  14. 14

    The critical role of the specialized social worker as part of ED/hospital-based elder mistreatment response teams.

    Elman A, Cox S, Gottesman E, et al.

    Journal of elder abuse & neglect 2024; (36(4)):384-394 doi:10.1080/08946566.2023.2255742.

    PMID: 37691425
  15. 15

    Profound Bradycardia After Intrathecal Baclofen Injection in a Patient With Hydranencephaly.

    Sechrist C, Kinsman S, Cain N

    Pediatric neurology 2015; (53(6)):532-4.

    PMID: 26411756
  16. 16

    [The hospital social service: a multi-year personal experience].

    Mattioli P

    Igiene e sanita pubblica 2019; (75(5)):349-354.

    PMID: 31971519
  17. 17

    Integrated care for children and young people with special health and care needs: a systematic review.

    Ghotane S, Hirve R, Forman J, et al.

    Archives of disease in childhood 2024; (109(11)):924-931 doi:10.1136/archdischild-2024-326905.

    PMID: 39079899
  18. 18

    Why do we not ask for more clinical ethics consultations?

    Isaacs D

    Journal of paediatrics and child health 2018; (54(9)):937-938 doi:10.1111/jpc.14136.

    PMID: 30178592
  19. 19

    Clinical ethics: what the anesthesiologist and the intensivist need to know.

    Vergano M, Magavern E, Zamperetti N

    Minerva anestesiologica 2018; (84(4)):515-522 doi:10.23736/S0375-9393.17.12055-9.

    PMID: 28707845
  20. 20

    [Opinion about clinical ethics consultation among intensivist physicians].

    Portales V MB, Beca I JP

    Revista medica de Chile 2021; (149(7)):997-1003 doi:10.4067/s0034-98872021000700997.

    PMID: 34751301
  21. 21

    The need for clinical ethics consultation: a monocentric observational survey study in the intensive care unit (Consul.E.T.I. study).

    Filippini M, Nicoli F, Picozzi M, Latronico N

    Journal of anesthesia, analgesia and critical care 2022; (2(1)):40 doi:10.1186/s44158-022-00069-0.

    PMID: 37386670
  22. 22

    [Current Status of Clinical Ethics and Creation of Ethical Organizational Culture].

    Sugiura M, Ando T

    Brain and nerve = Shinkei kenkyu no shinpo 2020; (72(7)):701-710 doi:10.11477/mf.1416201587.

    PMID: 32641566
  23. 23

    Clinical ethics consultation in the intensive care unit.

    Picozzi M, Gasparetto A

    Minerva anestesiologica 2020; (86(6)):670-677 doi:10.23736/S0375-9393.20.14028-8.

    PMID: 32000471
  24. 24

    Experiencing Positive Health, as a Family, While Living With a Rare Complex Disease: Bringing Participatory Medicine Through Collaborative Decision Making Into the Real World.

    , Poduri A, Devinsky O, et al.

    Journal of participatory medicine 2020; (12(2)):e17602 doi:10.2196/17602.

    PMID: 33064105

This page provides informational guidance on building a care team for a child with hydranencephaly and does not replace professional medical advice. Always consult your child's healthcare providers to create a tailored care plan.

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