Investigation For Congenital Hypothyroidism

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1 Royal Manchester Children s Hospital Investigation For Congenital Hypothyroidism Medical Investigations Unit, Ward 76 Instructions For Parents and Carers

2 Introduction Welcome to the Medical Investigations Unit, Ward 76. This leaflet has been written to explain what will happen within the Unit and to reassure you. You may like to take it home and read it again. Background information The following facts are provided for your interest and information. They are not a substitute to you asking your Doctor and us about your baby. Congenital Hypothyroidism What does it mean? This means that your baby was born with an under active thyroid gland. What causes Congenital Hypothyroidism? The thyroid gland develops in the baby very early in pregnancy. It develops in the back of the throat, and goes into its normal position in the neck. We do not know how faults occur. They are not inherited and the chances of having another child with the same condition are very small. Less commonly, the gland can grow and develop normally but does not produce enough thyroxine. This less common form of Congenital Hypothyroidism can be inherited. We will advise you about the risk of this happening in other children you may have in the future. 2

3 How common is Congenital Hypothyroidism? Congenital Hypothyroidism occurs once in every 3,500 to 4,000 births, and it is more common in girls than boys. The heel prick Your baby has had a heel prick carried out by the Health Visitor or Midwife. The sample of blood was sent to this hospital and a small number of chemical tests were performed on it. These included a test to detect whether your baby s thyroid gland is working normally; there was a suspicion your baby s thyroid gland may be under active. We have asked you to bring your baby into the Unit so that we can check that their thyroid gland is working properly. What is the thyroid gland? It is a gland in the neck which produces a hormone called thyroxine. The right amount of thyroxine is essential for your baby s future growth and development. If your baby is not producing sufficient thyroxine, medicine (to be given by mouth daily) will be prescribed, this will ensure your baby has the right amount of thyroxine. It is important that this test is done early in your baby s life. 3

4 The hospital tests 1. Baby s blood test: A cannula is inserted into one of your baby s veins and a blood sample is taken to detect the level of thyroxine in your baby s blood. A cannula is a small plastic tube which looks like a straw. It also allows fluids or medicines to be given into the blood stream. The cannula stays in until the thyroid scan is completed. This is to allow the dye to be put through the cannula then it is removed. 2. Mother s blood test: This is to check that there is no interfering substance in mother s blood, which has crossed over into the baby and misled us. This is done by a simple blood test. 3. Thyroid scan: A substance is injected into your baby s vein through the cannula. This substance is concentrated in the thyroid gland and so gives us a lot of information about the gland. Sometimes the thyroid is completely absent, or it may be small and poorly developed, and occasionally the thyroid is normal in size and position but does not work properly. 4. Knee X-ray The appearance of the bones at the knee indicate whether the thyroxine level has been low during the last few weeks of pregnancy. 4

5 What were the symptoms in my baby? There may have been no easily identified symptoms at all in your baby. However, usually there are one or two symptoms, which include slowness in feeding, sleepiness, constipation and slowness for jaundice to clear. Occasionally the skin is a little dry and the tongue more prominent than usual. How long will treatment be necessary and are there any side effects? Treatment with thyroxine is needed throughout life, but thyroxine is easily available and there are no side effects, provided that the dose is correct for the individual. (Getting the dose right is quite easy). Why should treatment begin early? Thyroxine is necessary for normal growth and development of the body and brain after birth. If a baby is left untreated for months, growth will be poor but most importantly brain development is at risk. Clearly, no unnecessary risks should ever be taken with a baby s intellectual development and so this condition is screened for and treatment is started early to avoid problems. Having started treatment, we expect babies to develop normally both physically and mentally. 5

6 Please write below any questions you may wish to ask when you come to the Unit. 6

7 Help and advice If you need any advice, help or reassurance in the first few weeks after diagnosis, please contact us at: Medical Investigations Unit Ward 76 Royal Manchester Children s Hospital Oxford Road, Manchester, M13 9WL Monday to Friday 8.00 am to 3.00 pm Tel: Alternatively your Health Visitor should also be able to answer any questions you may have. If you have any concerns out of these hours that cannot wait until the next day contact your GP. In an emergency you can go to your local Accident and Emergency Department. Suggestions, concerns and complaints If you have a concern, want advice or wish to make a comment please contact PALS (Patient Advice and Liaison Service) on , or 7

8 No Smoking Policy The NHS has a responsibility for the nation s health. Protect yourself, patients, visitors and staff by adhering to our no smoking policy. Smoking is not permitted within any of our hospital buildings or grounds. The Manchester Stop Smoking Service can be contacted on Tel: (0161) ( Translation and Interpretation Service Do you have difficulty speaking or understanding English? /6342 Endocrinology Department Royal Manchester Children s Hospital Oxford Road Manchester M13 9WL Copyright to Central Manchester University Hospitals NHS Foundation Trust TIG 58/07 Produced Nov 2007 Updated April 2011 Review Date April 2013 (SF Taylor CM3600)

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