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PubMed This is a summary of 20 peer-reviewed journal articles Updated
Neonatology

The First Weeks: Critical Care in the NICU

At a Glance

Newborns with inherited ichthyosis, including collodion babies and those with harlequin ichthyosis, require immediate supportive care in the NICU. The primary focus is preventing severe dehydration, regulating body temperature, and preventing infection using high-humidity incubators and intensive emollients.

Seeing your newborn in the Neonatal Intensive Care Unit (NICU) with a severe skin condition is one of the most difficult experiences a parent can face. At this stage, your baby’s skin is not yet able to perform its primary job: keeping moisture in and germs out [1][2]. The medical team’s focus is on providing “supportive care”—acting as a temporary external barrier while your baby’s skin transitions [1][3].

What You are Seeing: The Two Major Presentations

While your medical team works toward a genetic diagnosis, they will likely use one of two terms to describe your baby’s appearance:

  • Collodion Membrane: The baby is born encased in a tight, shiny, translucent layer that looks like “parchment” or “cellophane” [4][5]. This membrane typically begins to crack and shed within the first 10 to 14 days [6][7].
  • Harlequin Ichthyosis (HI): A more severe presentation where the skin is very thick and forms hard, diamond-shaped plates separated by deep red fissures [8][9]. While this is a severe presentation, it is vital to know that with modern intensive care and specialized treatments, survival rates and outcomes have improved dramatically [8].

Immediate Critical Care Priorities

In the first days and weeks of life, the skin’s barrier defect creates three primary life-threatening risks that the NICU team is trained to manage:

  1. Hypernatremic Dehydration: Because the skin is “leaky,” babies lose an enormous amount of water through evaporation (transepidermal water loss) [10][1]. This can cause salt (sodium) levels in the blood to become dangerously high [10].
  2. Temperature Instability: The damaged skin cannot regulate heat properly, making it very easy for the baby to become too cold (hypothermia) or too hot [10][1].
  3. Sepsis (Infection): The cracks and fissures in the skin are gateways for bacteria [1][11]. Preventing infection is a top priority [1].

How the NICU Supports Your Baby

The treatment in the NICU is designed to stabilize your baby’s environment, protect their skin, and ensure comfort:

  • High-Humidity Incubators: Your baby will likely be placed in a specialized incubator with very high humidity (often 60% to 90% or higher) [1][12]. This “wet” air slows down water loss from the skin and helps keep the membrane soft [1].
  • Intensive Emollients: Nurses will apply thick, bland ointments—usually sterile petrolatum (Vaseline)—multiple times a day [13][14]. This helps lubricate the skin, prevents further cracking, and provides an artificial barrier [13].
  • Pain Management: The deep fissures and cracks can be painful. The medical team will carefully assess your baby for signs of discomfort (like an elevated heart rate or distressed crying) and provide appropriate pain relief medications [1].
  • Fluid and Electrolyte Monitoring: The team will carefully track every milliliter of fluid your baby receives and monitor blood work daily to ensure their salt and hydration levels are safe [1][10].
  • Protecting Eyes and Limbs: Tight skin can pull the eyelids outward (ectropion), which can dry out the eyes [15]. It can also create tight bands around fingers or toes that could cut off circulation [16]. The team will monitor these closely and may use specialized lubricants or consult a surgeon if needed [15][16].

The Path Forward

While the first week is focused on survival and stabilization, the skin will begin to change [17]. In many collodion babies, the skin underneath may eventually look near-normal (a “self-improving” course), while others will develop a lifelong form of ichthyosis [7][18]. For Harlequin ichthyosis, doctors may recommend a medication called acitretin (a systemic retinoid) early in life to help the thick skin shed more quickly and reduce complications [19][20].

This period is a marathon, not a sprint. Your baby is receiving the most intensive care possible to navigate these first critical days [3]. Once your baby is ready to go home, you will transition to Daily Care and Management.

Common questions in this guide

What is a collodion membrane?
A collodion membrane is a tight, shiny, and translucent layer of skin that encases some babies with ichthyosis at birth. It looks similar to cellophane or parchment and typically begins to crack and peel off naturally within the first 10 to 14 days of life.
Why does my baby need a high-humidity incubator for ichthyosis?
Because your baby's skin cannot hold moisture effectively, they lose an enormous amount of water through evaporation. A high-humidity incubator slows down this water loss, helps keep the skin or membrane soft, and prevents dangerous salt imbalances and dehydration.
Are the tight skin bands dangerous for my baby's fingers and toes?
Tight, thick skin can create bands that restrict blood circulation to your baby's fingers and toes. The medical team closely monitors these areas, applying specialized lubricants and consulting a surgeon if necessary to ensure healthy blood flow is maintained.
How do doctors manage pain for a newborn with harlequin ichthyosis?
The deep fissures and cracking skin can be very painful for newborns. The NICU team constantly monitors your baby's heart rate and crying patterns for signs of discomfort, providing appropriate pain relief medications to keep them comfortable and relaxed.
What is acitretin and why might it be used for my baby?
Acitretin is a systemic retinoid medication that doctors may prescribe for severe presentations like harlequin ichthyosis. It helps the abnormally thick skin shed more quickly and safely, which can significantly reduce the risk of life-threatening complications.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What is the humidity level in the incubator, and is it being maintained at the highest possible setting?
  2. 2.Are we monitoring my baby's sodium levels and fluid balance daily to prevent dehydration?
  3. 3.Has an ophthalmologist checked my baby’s eyes to ensure the corneas are protected from the skin pulling?
  4. 4.Are there any signs of constriction on the fingers or toes that might require a surgeon's evaluation?
  5. 5.What is our protocol if a skin fissure looks infected or if my baby appears to be in pain?
  6. 6.Are we considering the use of systemic retinoids (like acitretin), and what are the potential benefits and risks for my baby?

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 (20)
  1. 1

    A fatal case of Harlequin ichthyosis: Experience from low-resource setting.

    Vella V, Maulida M, Earlia N, et al.

    Narra J 2023; (3(3)):e302 doi:10.52225/narra.v3i3.302.

    PMID: 38455615
  2. 2

    Early Neonatal Death in Harlequin Ichthyosis: A Case Report and Literature Review.

    Alanzi A, Alatefi D, Alkabazi M, et al.

    Clinical case reports 2025; (13(10)):e71190 doi:10.1002/ccr3.71190.

    PMID: 41113302
  3. 3

    A novel mutation in the transglutaminase-1 gene identified in a collodion baby: A case report.

    Lixiang W, Xianghong L, Lexia Y, et al.

    The Journal of international medical research 2025; (53(10)):3000605251382379 doi:10.1177/03000605251382379.

    PMID: 41062103
  4. 4

    A Case Report of a Collodion Baby: An Autosomal Recessive Genodermatosis.

    Quazi S, Singh A, Khan K, Biyani U

    Cureus 2023; (15(4)):e37418 doi:10.7759/cureus.37418.

    PMID: 37181951
  5. 5

    Collodion baby with ectropion in a Syrian newborn: a case report study.

    Soqia J, Mohamad L, Aloqla NA, et al.

    Annals of medicine and surgery (2012) 2023; (85(5)):1902-1905 doi:10.1097/MS9.0000000000000382.

    PMID: 37229057
  6. 6

    A New Born with Lamellar ichthyosis(Collodion Baby).

    Gul Z, Khan GA, Liaqat F, Muqarrab K

    Journal of the College of Physicians and Surgeons--Pakistan : JCPSP 2015; (25(8)):621-2 doi:08.2015/JCPSP.621622.

    PMID: 26305314
  7. 7

    Report of a Novel ALOX12B Mutation in Self-Improving Collodion Ichthyosis with an Overview of the Genetic Background of the Collodion Baby Phenotype.

    Anker P, Kiss N, Kocsis I, et al.

    Life (Basel, Switzerland) 2021; (11(7)) doi:10.3390/life11070624.

    PMID: 34199106
  8. 8

    Compound heterozygous ABCA12 variants identified in a Chinese patient with congenital ichthyosiform erythroderma: Advancing genotype-phenotype correlations and literature review.

    Liu JW, Guo K, Zhang R, et al.

    Molecular genetics & genomic medicine 2024; (12(5)):e2431 doi:10.1002/mgg3.2431.

    PMID: 38702946
  9. 9

    Hair follicles modulate skin barrier function.

    Ford NC, Benedeck RE, Mattoon MT, et al.

    Cell reports 2024; (43(7)):114347 doi:10.1016/j.celrep.2024.114347.

    PMID: 38941190
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    Improved Management of Harlequin Ichthyosis With Advances in Neonatal Intensive Care.

    Glick JB, Craiglow BG, Choate KA, et al.

    Pediatrics 2017; (139(1)) doi:10.1542/peds.2016-1003.

    PMID: 27999114
  11. 11

    ABCA12 homozygous mutation in harlequin ichthyosis: Survival without systemic retinoids.

    Sharma A, Rozzelle A, Jahnke MN, et al.

    Pediatric dermatology 2019; (36(3)):339-341 doi:10.1111/pde.13770.

    PMID: 30809833
  12. 12

    Harlequin ichthyosis from birth to 12 years.

    Heap J, Judge M, Padmakumar B

    BMJ case reports 2020; (13(8)) doi:10.1136/bcr-2020-235225.

    PMID: 32847877
  13. 13

    Management of Epidermolytic Ichthyosis in the Newborn.

    Avril M, Riley C

    Neonatal network : NN 2016; (35(1)):19-28 doi:10.1891/0730-0832.35.1.19.

    PMID: 26842536
  14. 14

    Safety of Petroleum-Based Emollients in Pediatric Atopic Dermatitis.

    Ghali H, Krenitsky A, Albers SE

    Clinical pediatrics 2025; (64(9)):1305-1311 doi:10.1177/00099228251331443.

    PMID: 40170321
  15. 15

    Surgical management of the highly edematous conjunctiva due to ectropion in a 3-year-old collodion baby.

    Chen D, Liu XW

    Chinese medical journal 2020; (134(4)):503-504 doi:10.1097/CM9.0000000000001060.

    PMID: 32932283
  16. 16

    Ischemic Risk in Collodion Baby: An Orthopaedic Perspective.

    Besonhe P, Docquier PL

    Case reports in orthopedics 2020; (2020()):1397465 doi:10.1155/2020/1397465.

    PMID: 32015921
  17. 17

    Congenital ichthyosis presentation and outcome - A case series.

    Ansari QA, Singh VA, Randad KG, Bansal P

    Journal of family medicine and primary care 2023; (12(11)):2990-2993 doi:10.4103/jfmpc.jfmpc_1080_23.

    PMID: 38186783
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    A case report and literature review of self-improving collodion baby in the newborn.

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    PMID: 40193669
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    Successful Treatment of Collodion Baby with Acitretin: A Report of Two Cases.

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    A Unique Preparation and Delivery Method for Acitretin for Neonatal Harlequin Ichthyosis.

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    PMID: 29720920

This page provides educational information about NICU care for newborns with inherited ichthyosis. Always rely on your neonatologist and pediatric dermatologist for your baby's specific medical management and treatment decisions.

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