Can children have FH?
Yes, children can have familial hypercholesterolaemia (FH), and because the condition is genetic, high cholesterol levels are present from birth. While heart disease usually develops in adulthood, the process of fatty buildup in the arteries (atherosclerosis) begins in childhood for those with FH. In the UK, early identification is a clinical priority, with current 2026 guidelines recommending that children at risk are tested by age 10 to allow for early lifestyle changes and monitoring.
What We’ll Discuss in This Article
- Why FH is present from birth and how it affects a child’s arteries.
- The 2026 UK screening pathway for children with a family history.
- Understanding the ‘Child-Parent Screening’ pilot and its national rollout.
- Cholesterol diagnostic thresholds for children (Simon Broome criteria).
- When statin treatment is typically considered for young people.
- The role of specialist paediatric lipid clinics in the UK.
- Using the BMI Calculator to support healthy growth and lipid management.
How FH Affects Children
In a child with FH, the liver is genetically less able to remove ‘bad’ LDL cholesterol from the blood. This leads to a lifelong exposure to high cholesterol, which is often double the level found in children without the condition. While most children with FH appear perfectly healthy and have no symptoms, research shows that by age 11, those with untreated FH already show a measurable thickening of their artery walls compared to their siblings.
The 2026 Diagnostic Pathway
In the UK, children are usually identified for testing if a parent has already been diagnosed with FH. This is part of the ‘cascade testing’ system. However, 2026 has seen the expansion of the Child-Parent Screening Service, where children are offered a simple heel-prick cholesterol test during their routine 1-year immunisation appointment.
Simon Broome Criteria for Children
A clinical diagnosis of FH is suggested in children (under 16) if their blood results show:
- Total Cholesterol: Above 6.7 mmol/L.
- LDL Cholesterol: Above 4.0 mmol/L.
If a child meets these thresholds, they are referred to a specialist paediatric lipid clinic for genetic DNA testing to confirm which gene is affected.
| Age Group | Primary Test Method | Goal of Testing |
| 1–2 Years | Heel-prick (Pilot screening) | Early identification of the whole family. |
| Under 10 Years | DNA Test (Cascade testing) | To confirm diagnosis before puberty. |
| Over 10 Years | Full Lipid Profile | To establish a baseline for potential treatment. |
Management and Treatment Targets
Managing FH in children is a careful balance of ensuring healthy growth while controlling lipid levels. The first line of management is always lifestyle-based, focusing on a heart-healthy diet and regular physical activity.
When are Statins Started?
NICE (National Institute for Health and Care Excellence) guidance states that lipid-lowering medication, such as statins, should usually be considered by the age of 10. The decision to start medication is based on:
- The child’s LDL levels (usually if consistently above 4.0 mmol/L).
- The family history of early heart disease.
- The presence of other risk factors.
The goal of treatment in children is typically to achieve at least a 50% reduction in LDL cholesterol from their baseline level.
The Importance of Specialist Care
All children in the UK suspected of having FH must be referred to a specialist with expertise in paediatric lipid management. These clinics provide a ‘child-focused’ environment where the whole family can receive support.
The Specialist Team Includes:
- Paediatric Lipidologist: A doctor specialising in blood fats in young people.
- Specialist Dietitian: To help families navigate heart-healthy eating without restricting growth.
- Genetic Counsellor: To explain how the condition is passed down and support family testing.
- FH Nurse Specialist: To coordinate long-term monitoring and blood tests.
Causes and Genetic Triggers
The only cause of FH in children is inheriting a faulty gene from a parent. This happens in an ‘autosomal dominant’ way, meaning there is a 50% chance a child will inherit FH if one parent has it.
- Heterozygous FH: Inherited from one parent. This is the most common form.
- Homozygous FH: Inherited from both parents. This is very rare but causes extremely high cholesterol (LDL >11 mmol/L) and requires urgent treatment from a very early age, often before age 5.
Source: https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/familial-hypercholesterolaemia/
To Summarise
Children can and do have FH, with high cholesterol levels present from birth. In the UK, most children are diagnosed through family cascade testing or the 1-year-old heel-prick screening pilot. Clinical diagnosis is based on total cholesterol above 6.7 mmol/L, and treatment with statins is typically considered by age 10. Early diagnosis allows children to grow up with protected arteries and a significantly lower risk of heart problems in later life.
If your child experiences unusual chest pain, extreme shortness of breath during play, or if you notice yellow lumps on their skin, contact your GP or a specialist immediately.
You may find our free BMI Calculator helpful for monitoring your child’s growth as part of their overall cardiovascular health review.
Will my child have to fast for their cholesterol test?
For the initial screen, fasting is often not required, but the specialist clinic may request a fasting sample for a more detailed look at triglycerides.
Are statins safe for children?
Yes, long-term data from the UK Paediatric FH Register shows that statins are safe for children and do not affect their growth or puberty.
What if my child’s test is high but I don’t have high cholesterol?
Because FH is genetic, at least one parent almost always has it. If a child tests positive, both parents should be screened immediately.
Can FH be ‘outgrown’?
No, FH is a lifelong genetic condition. While levels may fluctuate during puberty, the underlying genetic mutation remains.
Do children with FH need a special diet?
They need a ‘heart-healthy’ diet (low in saturated fat), but it must still provide enough calories and nutrients for normal growth and development.
How often will my child need blood tests?
Once stabilised, children with FH usually visit the specialist clinic once or twice a year for monitoring.
Authority Snapshot
Dr. Rebecca Fernandez is a UK-trained physician with an MBBS and experience in general surgery, cardiology, internal medicine, and emergency care. She has managed critically ill patients, stabilised acute trauma cases, and provided comprehensive care across inpatient and outpatient settings. This article provides evidence-based information aligned with the 2026 clinical standards from the NHS, NICE, and the British Heart Foundation regarding paediatric FH.
