In this section you will find details of the various tests, checks, conditions and medical professionals you may come across in the lifetime of a loved one with Down syndrome. This information is presented by life stage from newborn to adult.

The section has been compiled by our resident specialist in Down syndrome, Fiona McGrane. Fiona is our Nurse Manager and is based in the National Children’s Hospital in Tallaght, Dublin, where she is available to meet children with Down syndrome from anywhere in Ireland. Please contact us on 01 4266500 or if you would like to get in touch with Fiona.

Fiona’s main role is to support parents and their families by giving a clear understanding of the healthcare issues that may affect children with Down syndrome and the treatment and care options that are available as their child grows and develops, but she is also here to:

  • Play an active role in educating people with Down syndrome and their families in health and wellbeing
  • Assist individuals and parents in availing of health services
  • Act as an advocate for individuals and their families
  • Communicate with patients, their families and fellow healthcare professionals and helping to identify issues and provide advice
  • Promote individual and family participation in care
  • Identify and meet the needs of children with Down syndrome through childhood and adolescence and their family’s needs
  • Provide a communication link between parents and allied health professionals within hospitals and community services locally and nationally
  • Provide support and aftercare to individuals and their parents when they attend the hospital for procedures and give feedback to community services
  • Educate parents/service providers on entitlements
  • Educate parents regarding health issues that may occur
  • Take referrals from maternity/GP and community services
  • Carry out research within the area of Down syndrome in partnership with The Department of Paediatrics, Trinity College Dublin
  • Support and provide education sessions to the branches of Down Syndrome Ireland
  • Provide education sessions to student doctors/nurses and midwives throughout Ireland

Newborn and early years

Firstly, let us assure you that the vast majority of children with Down syndrome live healthy lives. In fact any health issues that are related to the condition are treatable and manageable.

Medical professionals are aware of the health issues that are more common in people with Down syndrome and the screening that needs to be carried out to ensure that your child remains well, which means that you can be assured that any issues your child may have will be picked up at an early stage.

In this section you will find information about:

  • The medical checks every newborn should have
  • The professionals that you may meet
  • What happens next
  • Some other aspects of your baby’s medical care that you should be aware of


If you have any questions relating to your child’s health or need further information, please feel free to get in contact with our dedicated Down syndrome nurse Fiona McGrane on 01 8963785 or

  • The medical checks every newborn should have

    When your baby was born he/she would have undergone certain medical checks.


    Weight and Length

    • All newborn babies are weighed at birth and their length is plotted. There are specific growth charts for children with Down syndrome.
    • Your paediatrician and/or your public health nurse will continue to monitor your child’s weight and height


    Blood Tests

    • A blood sample is taken at birth and this is sent to the genetics laboratory for karyotype testing. Karyotype testing is chromosomal analysis which will tell us which type of Down syndrome your child has. Your doctor will let you know the results in due course. Your doctor may also carry out a FBC (Full Blood Count). Routine blood samples are usually taken by your GP or paediatrician.



    • All newborn babies undergo a hearing test as part of the National Newborn Hearing Screening Programme. Your child’s hearing will continue to be monitored by your local HSE audiology service.


    Cardiac Testing

    • Due to an increased risk of cardiac issues, all newborns should have the following tests, ideally before six weeks:

    –Echocardiogram (ECHO): This test is an ultrasound of the heart that examines the structure and the sound waves.

    –Electrocardiogram (ECG): This records the electrical activity of the heart.

    • If no cardiac condition is identified it is likely that your child will be discharged from cardiac services and will not need another check until they are 18 years old.



    • Every newborn should have an eye exam to check for congenital cataracts, glaucoma and any other eye abnormalities.
    • A recheck should take place with an ophthalmologist at between six and ten months of age.
    • Your child’s sight will continue to be monitored by an ophthalmologist.


    Heel-Prick Test

    Guthrie Testing (the heel-prick test) is carried out on all newborn babies and screens for six conditions including Cystic Fibrosis, issues with the thyroid gland  and PKU (Phenylketonuria – an inherited disorder that if untreated will lead to permanent intellectual disability). It is recommended that the test be done three to five days after birth. This may be done in the hospital prior to discharge or by your public health nurse.

    This is the first test to check the functioning of the thyroid gland. It will be checked again with routine blood tests.


  • The professionals you may meet

    It can be difficult to keep track of all the appointments and the checks your baby may have had, not to mention all the different types of healthcare professionals you will come in contact with. We hope this list will help you understand who does what.

    Neonatologist – A doctor who specialises in the care of newborn babies.

    Paediatrician – A doctor who specialises in child health.

    Cardiologist – A doctor who specialises in diagnosing and treating conditions and diseases of the heart.

    Social Worker – A professional trained to support families and provide advice.

    Endocrinologist – Doctors who specialise in problems related to glands. You may meet this professional if your child has an issue with his or her thyroid.

    Ophthalmologist – A doctor who specialises in eye health and vision care.

    Optometrist – A healthcare professional who examines the eyes and vision for any issues.

    Audiologist – A healthcare professional who can monitor hearing levels. Audiologists can also identify and diagnose issues.

    Gastroenterologist – A doctor who specialises in the gastrointestinal tract. You may meet this doctor if you child has any problems with his or her stomach or bowels.

    Neurologist – A doctor who specialises in disorders that affect the brain, spinal cord and the nerves.

    Urologist – A doctor who specialises in problems related to the urinary tract.

  • What happens next?

    A referral will be sent from the maternity hospital to the following

    • A cardiologist (if indicated)
    • An ophthalmologist
    • Early intervention services. Early intervention services include therapies such as physiotherapy and speech and language therapy.
    • A referral to a paediatrician/GP
  • Some things to be aware of


    Some Early Intervention Services have a paediatrician attached to them who will continue to monitor your child’s health. If there is no paediatrician within the service we would encourage you to sign up with a good GP or ask for a referral to a paediatrician in your nearest hospital.

    Repeat checks

    In the first few months you may begin to receive appointments in the post for some repeat checks that need to be carried out in, for example, ophthalmology and audiology. This is routine, so please don’t worry. If no issues are picked up, your child will not need to be seen for another year.


    Your child may need to attend a cardiologist if any cardiac abnormality was identified that requires follow up or in the case where an Echocardiogram or an ECG was not carried out at birth.

    Thankfully, for the vast majority of children, checks such as those listed above become less regular as time passes.

  • The following websites/links may be useful

    Medical Management Guidelines for Children and Adolescents

    Down Syndrome Ireland has worked for many years alongside the Department of Paediatrics and Child Health, Trinity College, Dublin and the National Children’s Hospital, Tallaght to carry out ongoing research within the area of Down syndrome so that both parents and medical professionals have access to the most up-to-date research and information on Down syndrome.

    The Medical Management Guidelines for Children and Adolescents with Down syndrome in Ireland provide both parents and professionals with advice on monitoring the health of babies and children with Down syndrome. They cover growth, cardiac disease, thyroid disease, ophthalmic disorders, hearing impairment and cervical spine instability.

    Included on page 24 of the guidelines is an updated Suggested Schedule of Health Checks for your Child.

    The guidelines were first developed in 2001 with support from Down Syndrome Ireland and the Down Syndrome Medical Interest Group UK and Ireland. They are reviewed regularly to ensure the latest medical research is included. 

    Down Syndrome Medical Interest Group UK and Ireland

    Oral Health and Down Syndrome: Down Syndrome Ireland and the HSE have put together a simple brochure on dental care.

    Here is a link to a Down syndrome & dental care resource guide which a US-based dental practice has shared with us. It’s an excellent resource, full of information and tips for both patients, caregivers and dentists.

  • Breastfeeding

    Here, Ciara shares her story about breastfeeding her beautiful daughter Seána who has Down syndrome. Thank you Ciara for sharing your story with us.

    Cuidiu is a parent-to-parent support charity run by volunteer parents. Some of our amazing parents volunteer as breastfeeding counsellors with the charity and they, or any of the trained counsellors, can provide a wonderful support for new parents of babies with Down syndrome who wish to breastfeed. You can find more here.

    The La Leche League is a worldwide movement to help mothers to breastfeed through mother-to-mother support, encouragement, information, and education, and to promote a better understanding of breastfeeding as an important element in the healthy development of the baby and mother.

  • Health Passport

    Health passports are very important for people with disabilities, especially people with communications difficulties. A health passport allows health professionals to treat the person and cater for their individual needs. We encourage everyone to consider the completion of the standardised  HSE Health Passport as a supportive measure for healthcare needs.

5 to 18 Years

By now, you will know about any medical issues your child has. The key to keeping him or her healthy is to keep up regular screening so as to pick up any secondary medical issues that may arise as your son or daughter grows up. It is recommended to have your child checked up every two years between the ages of five and 18.

You might find The Medical Management Guidelines for Children and Adolescents with Down syndrome in Ireland useful. The guidelines provide both parents and professionals with advice on monitoring the health of babies and children with Down syndrome. They cover growth, cardiac disease, thyroid disease, ophthalmic disorders, hearing impairment and cervical spine instability.

Below is a list of some of the things that should be monitored.



  • Height and weight should be checked and plotted on Down syndrome-specific charts. If there are concerns about your child’s weight, BMI charts should also be used.


  • If your child has a history of cardiac issues, the cardiologist will let you know how often he/she will need a check-up. It is important to note that adolescents will need a repeat Echocardiogram (ECHO) in early adult life even if there was no cardiac issue at birth. This repeat test allows for the mitral valve in the heart to be checked when your child is fully grown.


  • The thyroid produces a hormone for growth and development. People with Down syndrome have an increased risk of having a thyroid problem so your child will need a blood test to monitor how his or her thyroid gland is functioning. 
  • Thyroid

    The thyroid gland is situated in the neck in front of the windpipe (trachea) and just below the larynx (voice box). It resembles a butterfly in shape. It produces several hormones (chemical substances) which circulate around the body in the blood. These hormones, one of which is thyroxine, help to keep growth and brain development at the correct pace and keep the body’s functions like metabolism/digestion working normally. Correct functioning of the thyroid is vital for mental and physical wellbeing.

    There is a greater frequency of thyroid dysfunction in people with Down syndrome and the frequency of dysfunction increases with age (0.7% infancy; 4–16% school age; 15–20% adolescents; 22–52% adults).  Problems occur when the thyroid gland cannot produce enough thyroxine to keep the body running at the best rate.


    Most Common Thyroid Problems with Down syndrome:


    Hypothyroidism (underactive) is the most common problem, both congenital and acquired. Symptoms typically include tiredness, overweight, constipation, dry skin, lifeless or sparse hair, feeling cold, and a rather hoarse voice. Symptoms usually develop slowly and gradually become worse over months or years as the level of thyroxine (T4) in the body gradually falls.

    Clinical features of Down syndrome can mask the presenting signs and symptoms of hypothyroidism, making clinical diagnosis unreliable.

    What causes hypothyroidism?

    The most common cause is an autoimmune disease called autoimmune thyroiditis. The immune system normally makes antibodies to attack bacteria, viruses, and other ‘germs’. If you have an autoimmune disease, the immune system makes antibodies against certain tissues of your body.

    With autoimmune thyroiditis, you make antibodies that attach to your own thyroid gland and affect the gland’s function. The thyroid gland is then not able to make enough thyroxine, and hypothyroidism gradually develops. It is thought that something triggers the immune system to make antibodies against the thyroid, though the trigger is not known.

    People with autoimmune thyroiditis have a small increased risk of developing other autoimmune conditions such as vitiligo (a skin disease that causes loss of pigment, resulting in irregular pale patches of skin), or pernicious anaemia (anaemia due to vitamin B12 deficiency).

    How is hypothyroidism treated?

    The treatment is to take levothyroxine (thyroxine) tablets each day. This replaces the thyroxine the thyroid gland is not making. Most people feel much better soon after starting treatment. Ideally, the tablet should be taken on an empty stomach (before breakfast). This is because some foods rich in calcium or iron may interfere with the absorption of thyroxine from the gut. (For the same reason, it is not advised to take thyroxine tablets at the same time of day as calcium or iron tablets). Treatment is usually for life.

    What are the possible complications of hypothyroidism?

    If undiagnosed and untreated in childhood, the child’s normal growth and brain development may be affected.  There may also be an increased risk of developing heart disease. This is because a low thyroxine level causes the blood lipids (cholesterol etc.) to rise. Hypothyroid coma (myxoedema coma) is a very rare complication. However, with treatment, the outlook is excellent, symptoms usually go, and you are very unlikely to develop any complications.

    How is hypothyroidism diagnosed?

    There are several tests of thyroid function known as thyroid function tests (TFTs).  These include blood sample measurement of:

    • Thyroid-stimulating hormone (TSH). This hormone is made in the pituitary gland. It is released into the bloodstream and stimulates the thyroid gland to make thyroxine. If the level of thyroxine in the blood is low, then the pituitary releases more TSH to try to stimulate the thyroid gland to make more thyroxine. Therefore, a raised level of TSH means the thyroid gland is underactive and is not making enough thyroxine.
    • Thyroxine (T4). A low level of T4 confirms hypothyroidism.
    • Thyroid antibodies (TPO) harm a person’s own thyroid gland and prevent it from producing enough thyroxine.



    There is also an increased prevalence of Hyperthyroidism (overactive) in children and adults with Down syndrome. Major clinical signs include weight loss (often accompanied by an increased appetite), anxiety, intolerance to heat, tiredness, hair loss, weakness, hyperactivity, irritability, apathy, depression, polyuria (producing abnormally large volumes of urine) and sweating. Additionally, patients may present with a variety of symptoms such as palpitations, shortness of breath (dyspnoea), nausea, vomiting, and diarrhoea. Long-term untreated hyperthyroidism can lead to osteoporosis.

    What causes Hyperthyroidism?

    Hyperthyroidism is the term for overactive tissue within the thyroid gland, resulting in overproduction and thus an excess of the thyroid hormones thyroxine (T4), triiodothyronine (T3), or both. This thyroid disorder is caused by an antibody-mediated auto-immune reaction, but the trigger for this reaction is still unknown.

    How is Hyperthyroidism treated?

    The treatment of hyperthyroidism is by a medication (carbimazole) which stops the overproduction of thyroid hormones but very occasionally an operation may be necessary to remove a part of the gland.


  • Blood Tests

    Your child may need other blood tests (see below). We advise you to ask your GP/Paediatrician about these tests to ensure only one blood-taking procedure is needed.

    –Coeliac screening (further details of coeliac disease can be found at

    –A full blood count

    –Vitamin D levels

  • Eye conditions and treatment

    Over 50% of children with Down syndrome will require glasses during their lives so it’s important that your child’s eyes be checked by an ophthalmologist and/or an optometrist. There are some eye conditions that are more common.

    Eye conditions and treatment:

    Refractive errors

    • Long sighted

    Affects the ability to see and identify objects that are close by. Some children are born with this problem and it can correct itself as the child grows and the eyes develop. Monitoring and early treatment can prevent further problems that can occur such as the child developing a squint or one of the eyes becoming lazy, which occurs when one eye becomes dominant over the other. Glasses are required in many cases to manage the problem

    • Short sighted

    Affects the ability to focus on distant objects but the person is able to see objects clearly when they are close by. There is a genetic link with this problem and if parents require glasses they should bear this in mind. At a young age it can be difficult to assess if the child is short sighted. Some of the signs to look out for include

    • squinting (narrowing their eyes)
    • frowning
    • sitting close to the TV
    • having trouble seeing the blackboard or whiteboard at school

    The condition is treated by wearing glasses. If diagnosed in early childhood, the condition needs to be monitored closely as the lens of the glasses may need to be changed frequently.


    Blepharitis Is a common condition. It presents as eyelid inflammation that sometimes is associated with a bacterial eye infection. It can cause crusting and flaking of skin around the eyes and extreme itching and irritation for the individual. It is recommended that individuals with this problem carry out regular cleansing of the eyes with a regime recommended by a medical practitioner. Avoidance of irritants such as body washes and shampoos is also advised. In some cases the usage of eye drops may be necessary to alleviate the problem.


    A strabismus is a disorder that occurs when the two eyes do not focus in the same direction. With the condition, the child’s eyes appear to be crossed. The human eye consists of six muscles that surround the eye which must work together so that the eye can focus. If a strabismus is present this does not happen and as a result both eyes focus on different objects and a confused message is sent to the brain for processing. The brain over time does not process the image from the weaker eye and the child will only be able to see with one eye. Treatment options include a patch being placed over the better eye, which forces the weaker eye to work harder thus increasing muscle strength. The child may also require glasses during this time. Eye surgery may be recommended in certain cases to deal with the poor muscles of the lazy eye and glasses will be needed after the surgery for vision.


    A cataract causes changes in the clarity of the lens in the eye which becomes cloudy as a result. Cataracts gradually cause vision to deteriorate. Surgery is necessary to correct the problem.


    Glaucoma is the increased pressure of fluid in the eye which causes damage to the optic nerve leading to problems with eyesight. Screening for glaucoma is carried out during a routine eye examination. It can be treated with medication or surgery depending on severity.

    Finding a Specialist Optometrist

    Some optometrists complete specialist training in working with people with Down syndrome. As well as having a really good knowledge of what is happening in the eye of someone with Down syndrome, they also have specialist equipment which the eye test and the glasses they make. It is worth finding out who is the specialist optometrist closest to you. Anyone who wears glasses will tell you how important it is to have glasses that are right for vision and comfortable to wear. This is particularly important for people with Down syndrome. It doesn’t take a lot to get it right, but it can make a huge difference to the children and adults involved.

  • Hearing
    • Optimal levels of hearing are vital for speech and language development. There are two different types of hearing loss: conductive hearing loss and sensorineural hearing loss.
    • During times of congestion (such as when your child has a cough or cold), the child may experience difficulties with his or her ability to hear correctly.
    • If you have ongoing concerns about your child’s hearing you should discuss this with your GP/Paediatrician or the audiologist that you attend.



    Hearing loss – Types and treatment

    Conductive hearing loss (CHL)

    This is the most common type of hearing loss associated with Down syndrome. Children with Down syndrome tend to have narrow ear canals that are also hour-glass shaped. This can lead to a build up of wax and fluid in the middle ear. Conductive hearing loss can fluctuate (come and go) and some parents report hearing loss to be more evident when their child is congested. Children who fail a hearing test usually have it repeated again as the levels may normalise over time. Children who consistently fail assessment will be treated with either surgical intervention (grommets) or with a hearing aid. Your audiologist will recommend the treatment pathway, which may involve a consultation with an ENT (Ear, Nose and Throat) doctor for further advice.

    Sensory Neural hearing loss (SNHL)

    This occurs when there is a problem with the transmission of sound in the inner ear or with the auditory nerve and the cochlea. There are surgical treatments available such as a cochlear implant and also hearing aid options. An ENT doctor will advise you.

    Mixed Hearing Loss (MHL)

    This is a combination of sensory-neural hearing loss and conductive hearing loss. Treatment options should be discussed with an ENT doctor.

    Here is a video you may find useful:

    Miracle-Ear – Anatomy of the Ear and Hearing Loss

  • Atlanto Axial Instability
    • This condition occurs when there is excessive movement between the first and second bones that are found in the neck. Further information and a list of treatments can be found in the publication Medical Management Guidelines for Children and Adolescents with Down syndrome here.
    • Children who wish to take part in certain sporting activities eg horseriding and athletes taking part in The Special Olympics may need to be cleared for this condition before they can take part.
  • Sleep Apnoea
    • Some children and adults may require a sleep study to test for sleep apnoea if they have any of the following issues:

    –Snoring at night time

    –Unusual sleeping positions

    –Gasping or changes in breathing during sleep

    –Night-time waking

    –Daytime tiredness and difficulty with concentration

    • If you have any concerns regarding your child’s sleep, you should discuss them with your GP/Paediatrician.

    Sleep apnoea and children with Down syndrome 

    Parental concerns regarding their child’s sleep is common.  Many parents report that their child is congested at night time especially during the winter months, which in turn leads to sleepless nights and restless sleep for both them and their children. Snoring while congested is completely normal but if snoring is ongoing further investigations should be carried out to eliminate the presence of sleep apnoea.

    What is sleep apnoea?

    Sleep apnoea is a medical condition that occurs when an individual stops breathing during sleep and oxygen levels decrease for short periods. Children with Down syndrome appear to be at greater risk of developing or having this condition. Approximately 60% of children with Down syndrome are presenting abnormal polysomnograms (sleep studies) by the age of three and a half to four years (Source: NDSS 2016). 

    There are three different types of sleep apnoea

    • Obstructive sleep apnoea: This is caused by an obstruction in the upper airway. This type is the most common in children with Down syndrome. Large tonsils and adenoids are the most likely cause and these may need to be removed to treat the apnoea. Other causes can be muscle laxity of the tongue or the soft palate and chronic congestion.
    • Central sleep apnoea: This type is defined as “a neurological condition where there is cessation of breathing during sleep” ( 2016). This occurs because the brain temporarily fails to signal and coordinate spontaneous breathing.
    • Mixed sleep apnoea: Occurs when there is a combination of obstructive and central sleep apnoea.

    A polysomnogram (sleep study) will identify which type of sleep apnoea is present.

    Risk factors

    • Muscle weakness: Can cause muscles at the back of the throat and neck to be more relaxed causing narrowing and laxity whilst sleeping.
    • Being overweight: This is a major cause of sleep apnoea as it puts a strain on the muscles in the throat.
    • Being male: It is unknown why males are at more risk of developing the condition.
    • Having large tonsils, adenoids and tongue.
    • Family history of the condition.


    • Loud snoring
    • Audible gasping during sleep
    • Restless sleep (may regularly toss and turn at night)
    • Waking at night
    • Unusual sleep positions such as neck extension or sleeping bend forward at the waist
    • Sweating during sleep
    • Tiredness during the day (may fall asleep during tasks)
    • Lack of concentration
    • Irritable during the day due to tiredness


    If you are concerned about your child, you should firstly discuss it with your child’s GP or paediatrician. If they then feel that further investigations are necessary they will refer your child to a respiratory consultant who specialises in the condition.  After a consultation he/she may then carry out a polysomnogram, which usually takes place within a hospital setting. Parents are encouraged to stay overnight to reduce their child’s anxiety and make the test easier for all involved. A polysomnogram is the gold standard to diagnose sleep apnoea and allows for the doctor to recommend treatment options.

    The study itself is non-invasive but requires a series of leads to be attached to your child so as to monitor him or her as they sleep. Some children may find it difficult to have a full polysomnogram due to anxiety or noncompliance; in these cases, an overnight oxygen saturation monitoring study may be carried out instead.


    Surgical intervention: If the results of the polysomnogram indicate that the apnoea is obstructive in nature a consultation with an ENT (ear, nose and throat) consultant may be the first line of treatment.  An assessment will be carried out to examine the tonsils and/or adenoids. If these are large they may be causing the obstruction. Surgical removal may resolve the condition.

    Continuous Positive Airway Pressure (CPAP) and Bilevel Positive Airway Pressure (BIPAP): Children may be recommended either CPAP or BIPAP machines as treatment options. Both devices deliver air pressure through a mask in order to keep the airways open during sleep. The pressure of air that is delivered will be based on the results of the polysomnogram. Some children may experience difficulties with wearing the mask at night but it is vital that you continue to persevere and communicate with your medical team. The companies that supply the equipment also provide excellent advice and support if needed.

    Once treatment is commenced your paediatrician will continue to monitor your child and polysomnograms will be repeated. Muscle tone and growth in children with Down syndrome can improve the condition leading to some cases resolving spontaneously over time. However, if sleep apnoea is left untreated cognitive abilities and growth may be affected. It can also cause secondary medical problems such as high blood pressure and pulmonary hypertension; therefore early detection and treatment are vital to prevent further problems.

    If you have any concerns or questions in relation to sleep apnoea feel free to discuss it with your GP or paediatrician. Alternatively you can get in contact with our Nurse Manager, Ms Fiona McGrane on 01 8963785.

    Support services


    Health Service Executive 2016 accessed at

    National Down syndrome Society 2016 accessed at

    The Down Syndrome Medical interset Group Sleep Disordered Breathing guidelines.


    Written by Ms Fiona McGrane, DSI Nurse Manager for children with Down syndrome, and Dr Peter Greally, Consultant Paediatrician in Respiratory Medicine, National Children’s Hospital, Tallaght, Dublin 24.

  • Down Syndrome Associated Arthritis

    This explanatory video was produced as part of a student project at the UCD Centre for Arthritis Research.

    Down Syndrome Associated Arthritis is an aggressive, erosive, inflammatory arthritis that affects one in 50 children with Down syndrome.

    Down Syndrome Associated Arthritis is potentially more aggressive than juvenile idiopathic arthritis (JIA), which affects one in 1,000 children. A four year research project has found that children with Down syndrome are 18-21 times more likely to suffer from the debilitating disease than children without Down syndrome.

    Furthermore, due to a lack of awareness of the increased risk of arthritis in children with Down syndrome, this group is potentially at a greater risk of long-term complications.

    The research was undertaken at UCD School of Medicine in partnership with clinicians in Our Lady’s Children’s Hospital, Crumlin and was supported by Down Syndrome Ireland, Arthritis Ireland and the National Children’s Research Centre.

    We are working to increase awareness about the condition and towards improving the care of children with Down syndrome who have been diagnosed with arthritis.

    Consider seeking the opinion of your doctor if you notice any of the following

    • A change in your child’s behaviour e.g. seeking comfort, irritability, dislikes holding your hand (may suggest arthritis of the fingers or wrist)
    • Subtle adaptations to overcome difficulty e.g. bum shuffles downstairs
    • A change or dis-improvement in handwriting
    • Regression in motor milestones
    • Your child becomes less active
    • Your child walks with a limp
    • Your child is slow to get going in the mornings, may suggest early morning stiffness, a sign of arthritis
    • Joint swelling, maybe a sign of inflammatory arthritis
    • Your child bites their fingers or rubs a particular joint, may suggest arthritis.


    Looking for greater detail on the research?

    You can read the  Detailed Preliminary Findings here

  • Useful reading

    Down Syndrome Ireland has worked for many years alongside the Department of Paediatrics and Child Health, Trinity College, Dublin and the National Children’s Hospital, Tallaght to carry out ongoing research within the area of Down syndrome so that both parents and medical professionals have access to the most up-to-date research and information on Down syndrome.

    The Medical Management Guidelines for Children and Adolescents with Down syndrome in Ireland provide both parents and professionals with advice on monitoring the health of babies and children with Down syndrome. They cover growth, cardiac disease, thyroid disease, ophthalmic disorders, hearing impairment and cervical spine instability.

    Included on page 24 of the guidelines is an updated easy-read Suggested Schedule of Health Checks for your child.

    The guidelines were first developed in 2001 with support from Down Syndrome Ireland and the Down Syndrome Medical Interest Group UK and Ireland. They are reviewed regularly to ensure the latest medical research is included.

    While there can be an abundance of medical information about Down syndrome, there is not a lot that provides real insight into the realities of having a child with Down syndrome.

    Our booklet ‘…more than medical’ is a resource to help support families and new parents with a pre or postnatal diagnosis of Down syndrome for their baby.  

    We would also recommend these useful free resources from Down Syndrome Associations that cover a wide variety of social developmental topics such as emotional wellbeing, behaviour, puberty, mindfulness and more.