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

Building Your Care Team and Preparing for the Hospital

At a Glance

When treating SCID, selecting a hospital with a specialized pediatric immunology and transplant team is crucial. Look for PIDTC member centers with HEPA-filtered isolation rooms. As a parent, you are the most important advocate for your baby during their weeks-long hospital stay.

Because SCID is complex and rare, your child’s care requires a “team of teams.” You are the most important member of this group—the person who knows your baby best and will advocate for them every step of the way [1]. Choosing a center with specific expertise in Primary Immunodeficiency (PI) is critical, as treating SCID is very different from treating pediatric cancers like leukemia [2][3].

The Core Medical Team

Your care will likely be led by two main groups of specialists who work closely together [2][4]:

  • Pediatric Immunologists: These are the “architects” of the immune system. They confirm the diagnosis, manage initial protective isolation, and oversee the long-term recovery of the immune system after treatment [5].
  • Hematopoietic Stem Cell Transplant (HSCT) Team: These are the “surgeons” of the blood system. They manage the chemotherapy (conditioning) and the actual infusion of the new stem cells. They are experts in managing the intense side effects that can occur during the transplant process [2][3].
  • Specialized Support: You will also work with Infectious Disease doctors to prevent and treat germs, Dietitians to ensure your baby grows despite the stress of treatment, and Social Workers to help your family navigate the emotional and financial toll of a long hospital stay [4][6][7].

Evaluating a Transplant Center

Not all transplant centers are equal when it comes to SCID. When vetting a hospital, it is important to ask about their experience with non-malignant (non-cancer) transplants [2][3].

  • PIDTC Membership: Ask if the center belongs to the Primary Immune Deficiency Treatment Consortium (PIDTC) [8][9]. This is a network of centers that specialize in research and best practices specifically for SCID and related disorders.
  • Infrastructure: Ensure the hospital has dedicated HEPA-filtered and positive-pressure rooms [10][11]. These specialized air systems are essential for keeping airborne germs (like fungal spores) away from your baby while their immune system is being rebuilt [12][13].

What to Expect During Inpatient Stay

A transplant stay usually lasts several weeks to months. During this time, your baby will be in strict isolation [1].

  1. The “Clean Room”: Everyone entering the room will likely be required to wear a mask, gown, and gloves [1]. Hand hygiene is non-negotiable [14].
  2. Monitoring: Expect your baby to be hooked up to monitors that track their heart rate and oxygen levels 24/7.
  3. Nutrition: Because chemotherapy and transplant can make eating difficult, many babies receive nutrition through an IV (Total Parenteral Nutrition or TPN) or a feeding tube [4].
  4. The “Nadir”: There will be a period called the “nadir” after chemotherapy when your baby’s blood counts are at their lowest. This is the most vulnerable time, and the team will be on high alert for any signs of infection [15].

Being Your Child’s Primary Advocate

You are the constant in your baby’s care while doctors and nurses change shifts.

  • Keep a Journal: Track daily counts (white blood cells, platelets), medications, and any small changes you notice in your baby’s behavior or appearance.
  • Speak Up: If something doesn’t seem right—even if it’s “just a feeling”—tell the nurse or doctor. In SCID care, catching a small change early can prevent a major complication [16].
  • Ask for Clarification: Medical jargon is overwhelming. It is okay to ask “Can you explain that in plain language?” as many times as you need.

Once the transplant is completed, your team will help transition you to the monitoring phase. See Life After Treatment for more information.

Common questions in this guide

What kind of doctors treat SCID?
Your baby's care will be led by pediatric immunologists who manage the immune system and a stem cell transplant team who handle the conditioning and cell infusion. They work alongside infectious disease specialists, dietitians, and social workers.
What should I look for in a SCID transplant center?
You should seek a center with significant experience in non-cancer pediatric transplants, ideally one that belongs to the Primary Immune Deficiency Treatment Consortium (PIDTC). It is essential that the hospital has dedicated HEPA-filtered, positive-pressure rooms to protect your baby from germs.
How long will my baby stay in the hospital for a SCID transplant?
A typical hospital stay for a stem cell transplant lasts several weeks to months. Throughout this time, your baby will be kept in strict isolation while their immune system is being rebuilt.
What does the term nadir mean during a transplant?
The nadir is the period after chemotherapy when your baby's blood counts reach their lowest point. Because the immune system is essentially wiped out, this is the most vulnerable time for infections, requiring heightened monitoring by the care team.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many babies with SCID has this center treated with transplant or gene therapy in the last 5 years?
  2. 2.Is this center a member of the Primary Immune Deficiency Treatment Consortium (PIDTC)?
  3. 3.How do the immunology and transplant teams communicate, and who will be my primary contact during the hospital stay?
  4. 4.Do you have dedicated HEPA-filtered, positive-pressure rooms for SCID infants?
  5. 5.What is your center’s success rate for the specific donor type (e.g., haploidentical vs. matched) you are recommending for my child?
  6. 6.What specialized support services (child life specialists, social workers, dietitians) are available to help our family during a long inpatient stay?

Questions For You

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References

References (16)
  1. 1

    Positive Newborn Screening for Severe Combined Immunodeficiency: What Should the Pediatrician Do?

    Mongkonsritragoon W, Huang J, Fredrickson M, et al.

    Clinical medicine insights. Pediatrics 2023; (17()):11795565231162839 doi:10.1177/11795565231162839.

    PMID: 37025258
  2. 2

    Hematopoietic Stem Cell Transplantation for Primary Immunodeficiency Disorders: Experience from a Referral Center in India.

    Uppuluri R, Jayaraman D, Sivasankaran M, et al.

    Indian pediatrics 2018; (55(8)):661-664.

    PMID: 30218511
  3. 3

    An overview of how on-call consultant paediatricians can recognise and manage severe primary immunodeficiencies.

    Wekell P, Hertting O, Holmgren D, Fasth A

    Acta paediatrica (Oslo, Norway : 1992) 2019; (108(12)):2175-2185 doi:10.1111/apa.14930.

    PMID: 31278775
  4. 4

    Brazilian Nutritional Consensus in Hematopoietic Stem Cell Transplantation: children and adolescents.

    Nabarrete JM, Pereira AZ, Garófolo A, et al.

    Einstein (Sao Paulo, Brazil) 2021; (19()):eAE5254 doi:10.31744/einstein_journal/2021AE5254.

    PMID: 34909973
  5. 5

    Severe combined immunodeficiency diagnosis and genetic defects.

    Aranda CS, Gouveia-Pereira MP, da Silva CJM, et al.

    Immunological reviews 2024; (322(1)):138-147 doi:10.1111/imr.13310.

    PMID: 38287514
  6. 6

    Evaluation of the role of the clinical Nurse Specialist in cancer care: an integrative literature review.

    Kerr H, Donovan M, McSorley O

    European journal of cancer care 2021; (30(3)):e13415 doi:10.1111/ecc.13415.

    PMID: 33501707
  7. 7

    The Pediatric Clinician's Approach to Referring Children and Adolescents with Sickle Cell Disease for Potentially Curative Therapies.

    John TD, Krishnamurti L

    Pediatric clinics of North America 2026; (73(1)):203-218 doi:10.1016/j.pcl.2025.08.018.

    PMID: 41207739
  8. 8

    Infections in Infants with SCID: Isolation, Infection Screening, and Prophylaxis in PIDTC Centers.

    Dorsey MJ, Wright NAM, Chaimowitz NS, et al.

    Journal of clinical immunology 2021; (41(1)):38-50 doi:10.1007/s10875-020-00865-9.

    PMID: 33006109
  9. 9

    The diagnosis of severe combined immunodeficiency: Implementation of the PIDTC 2022 Definitions.

    Dvorak CC, Haddad E, Heimall J, et al.

    The Journal of allergy and clinical immunology 2023; (151(2)):547-555.e5 doi:10.1016/j.jaci.2022.10.021.

    PMID: 36456360
  10. 10

    A 2-year comparative study of mold and bacterial counts in air samples from neutral and positive pressure rooms in 2 tertiary care hospitals.

    Ryan L, O'Mara N, Tansey S, et al.

    American journal of infection control 2018; (46(5)):590-593 doi:10.1016/j.ajic.2017.10.019.

    PMID: 29307752
  11. 11

    A practical approach to investigating nosocomial acquisition of Aspergillus.

    Meijer EFJ, Marek A, Ramage G, et al.

    Medical mycology 2025; (63(2)) doi:10.1093/mmy/myaf007.

    PMID: 39875195
  12. 12

    Distribution and the trend of airborne particles and bio-aerosol concentration in pediatric intensive care units with different ventilation setting at two hospitals in Riyadh, Saudi Arabia.

    Alghamdi W, Neamatallah AA, Alshamrani MM, et al.

    Journal of infection and public health 2023; (16(4)):588-595 doi:10.1016/j.jiph.2023.02.015.

    PMID: 36842194
  13. 13

    Invasive Aspergillosis in Hematological Patients.

    Kimura S

    Medical mycology journal 2016; (57(2)):J77-88 doi:10.3314/mmj.57.J77.

    PMID: 27251320
  14. 14

    Variability in practice patterns regarding protective isolation measures after heart transplantation: A secondary analysis of the international BRIGHT study.

    Alaerts E, Dreesen C, Denhaerynck K, et al.

    American journal of infection control 2020; (48(7)):786-790 doi:10.1016/j.ajic.2019.11.012.

    PMID: 31928889
  15. 15

    Long Term Outcome and Immune Function After Hematopoietic Stem Cell Transplantation for Primary Immunodeficiency.

    Gennery AR, Lankester A,

    Frontiers in pediatrics 2019; (7()):381 doi:10.3389/fped.2019.00381.

    PMID: 31616648
  16. 16

    Survival After Hematopoietic Stem Cell Transplantation in Severe Combined Immunodeficiency (SCID): A Worldwide Review of the Prognostic Variables.

    Goebel GA, de Assis CS, Cunha LAO, et al.

    Clinical reviews in allergy & immunology 2024; (66(2)):192-209 doi:10.1007/s12016-024-08993-5.

    PMID: 38689103

This page provides educational information about building a care team for SCID. It is not medical advice; always consult your pediatric immunologist and transplant team regarding your child's specific medical care.

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