SCID screening evaluation: higher chance information for parents
Published 18 August 2021
Applies to England
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Parents and carers will have already been told verbally that an appointment has been made for their baby to attend flow cytometry to check for definite if their baby has severe combined immunodeficiency (SCID).
That conversation will have followed the checklists for immunology services. This information is provided to reinforce that conversation.
We recommend copying and pasting the text below into an email or a text to send to parents and carers immediately after the phone conversation.
Congratulations on the birth of your baby.
As discussed, your baby needs an extra test to check for SCID or another related condition following their newborn screening heel prick.
It does not mean your baby definitely has SCID or another condition, but it does mean that they have a higher chance of having SCID.
If your baby was born before 37 weeks
If your baby was born before 37 weeks, they are more likely to have a newborn screening result that needs following-up. However, they are not more likely to have SCID.
What will happen at your appointment
During your baby’s appointment you will see a specialist team who will carry out a diagnostic test (blood test) to check your baby’s immune system.
This test will confirm if your baby:
- does not have SCID or another condition, and can be discharged
- has another condition affecting the immune system
- has SCID
In most cases, you will get the results the same day although further tests may be needed. You will have time to ask any questions.
Please be aware that the appointment can take all day.
SCID
SCID is the name given to a group of rare inherited conditions which cause major problems with the immune system. Babies with SCID are at higher risk of infection because their immune system does not work properly.
SCID screening: helping you decide if you want this for your baby has more information about screening for SCID. Great Ormond Street Hospital for Children has more information about SCID.
Treatment
If your baby is confirmed as having SCID, the team will explain any treatment that your baby may need.
Treatment for SCID is far more likely to be successful if started early and screening makes this possible.
If tests show that your baby has SCID, a bone marrow transplant can restore the body’s defence against infections.
Some types of SCID respond to gene therapy. This involves replacing an unhealthy gene in your baby’s body with a healthy one.
Following treatment, babies may need long-term medication.
Support for your family
We understand this screening result is unexpected and may be upsetting for you and your family.
Please remember that your baby’s screening result does not mean your baby definitely has SCID.
You can discuss any concerns with the SCID team at your hospital appointment. Everything will be done to support your family and make sure you get to know test results as soon as possible.
If your baby has SCID, please remember that the condition has been found very early because of newborn screening and that this will help to give your baby the best possible start in life.
Further information
Occasionally, your baby may need to stay in hospital overnight. We suggest that you bring an overnight bag for you and your baby.
If your baby becomes unwell before this appointment, please take your baby to your local Accident and Emergency department (also known as emergency department or casualty).
Appointment details
Date: (detail to be added by clinician at time of or after discussion with parents)
Time: (detail to be added by clinician at time of or after discussion with parents)
Location: (full address including building name, location within building – for example second floor and name of unit – and nearest car park)
Contact details: (add team name and telephone number)
Member of team you will be seeing: (referral centres can add the list of team members if they think this would be helpful or delete as applicable)
Nearest train station: (add information or delete as applicable)
Public transport links: (add information or delete as applicable)