Explanation and planning

Question 1

Important skills to remember?

Answer 1

Chunk and checking
Signposting
Repetition and summarising

Question 2

Setting the scene for explanation and planning?

Answer 2

Assess patients starting point
Sets your agenda
Asks how much they would like to know and if there are any specifics they want to know

Question 3

What has happened so far?

Answer 3

Baby has had a blood spot test - this has highlighted one result which requires further investigation
This result may just be inconsequential finding or it may indicate something which needs treating in your baby

So I can discuss what will happen next
And also the condition this may indicate your baby has

before we go on I want to reassure you that even if your baby has the condition that we are investigating - it is completely treatable and with regular medication your baby will live a normal life

Question 4

What is the blood spot test?

Answer 4

Blood was taken from your babies heel

Question 5

The condition background?

Answer 5

The blood spot test we have already talked about - tests a hormone (or chemical messenger) in your blood - this chemical can tell us how well a gland in your neck is functioning
This gland is the thyroid - is this something you have heard of before? Can you tell me what you know about it?

So if the thyroid doesn’t produce enough or any of the chemicals it is supposed to the body has a hard time growing, developing and turning food into energy

Question 6

CHT?

Answer 6

About 1 in 2000 babies in the UK each year are born with something called CHT

Babies with CHT don’t make enough of the chemical thyroxine

This is something that you as the mother had/have no control over, nothing you could have done would have changed this

Question 7

Different causes of CHT?

Answer 7

CHT can be pure chance, or inherited, but again there was nothing you could have done to know or prevent this

It can result of a few different physical reasons:
- Abnormal development of the thyroid gland itself - for some babies the thyroid galnd doesn’t reach the proper place in the neck while developing, or may be too small. Sometimes it doesn’t grow at all.
- Thyroid gland can be in the right place but not produce enough of the hormone (thyroxine)

Question 8

What further tests do we need to do?

Answer 8

• We have already tested for a hormone TSH (this is produced by the brain and gives us a ballpark estimation of how the thyroid is doing - this could be raised because the thyroid isn’t responding, or other reasons, ie. a inconsequential rise, or due to your own hormones

We now need to:
- Further blood tests - this time measuring the TSH again but also the level of thyroxine (the hormone we talked about earlier)
- Thyroid scans may be done - this is something that if required you will be able to discuss with the teams more knowledgeable about them than me later down the line
- You may be asked to have a blood test to see if your hormones are interfering with babies

Question 9

Treatment?

Answer 9

So if this condition is picked up - there is a very simple treatment
- A drug taken everyday called levothyroxine
- this should be taken everyday by mouth, it will come as a tablet, so can be crushed and given with a little bit of milk. A liquid formula is also available
- Regular blood tests will be done to ensure we are adequately treating your baby
- most babies with CHT need this treatment for life, but will live a perfectly healthy and normal life, there also is the possibility that around 2-3 years your baby might not need it anymore

Question 10

Nitty gritty of medication?

Answer 10

• Mixing: tablets should not be mixed into bottle feed because if the baby does not finish, he won’t get the full dose
• Forgetting a dose: If you forget a dose of levothyroxine, give it as soon as you remember, as long as this is at least 12 hours before the next dose is due. You do not need to wake up a sleeping child to give a missed dose. Do not give a double dose.
• If baby vomits: If your baby vomits immediately after taking the medicine, you should give another dose.

I will give you a leaflet which lays all of this out don’t worry

Question 11

Follow up checks?

Answer 11

baby’s first blood tests are usually 2 weeks after treatment starts, and then after approximately 4 weeks, 8 weeks, 3 months, and 4 months. They are then every 2 to 3 months until the baby is a year old.

These blood tests are frequent during the first year of life as your baby will be growing fast. Testing tends to be less frequent in the next 2 years, but should not be less than twice a year.

Question 12

Signs of hypothyroidism?

Answer 12

• Jaundice
• sleeping longer
• Constipation
• Floppy
• Swelling around the eyes
• Bad growth

Any of these things may indicate your babies amount of levothyroxine isn’t enough - bring them back in and we will make sure to increase it

Don’t overly worry as with frequent tests this shouldn’t happen

Question 13

Signs of hyperthyroidism?

Answer 13

• irritability
• Feeding problems
• Excessive vomiting and diarrhoea
• Feeling hot

lots of symptoms but will give you leaflet so you can always refer back

These may indicate your baby has too much of the medication - and dose needs to be reduced

Question 14

Potential for false positives?

Answer 14

Transient hypothyroidism - 10% of babies with CHT have transient abnormality which resolves around 2-3 years
Maternal iodine deficiency