To be frank, I knew about hypothyroidism which is a deficiency of Thyroid hormones in adults but had not heard of Congenital Hypothyroidism. When I came across an article, I realized that Congenital Hypothyroidism is the most common preventable cause of intellectual disability globally. It is present in 1 in 4000 babies at birth. And, they can lead completely normal lives and grow intellectually if proper neo-natal screening for the same is done and the necessary medication taken. You will be surprised to know that despite the low cost of the test, this test is not mandatory in India.

If your child has congenital hypothyroidism, and it is not diagnosed within the first few months of life then your child will grow up to be mentally and physically deficient or what is medically called a cretin.

What is congenital hypothyroidism?

The thyroid gland located in our neck produces T3 and T4 which are two essential thyroid hormones. These hormones are very important in our growth and development. When the thyroid gland secretes less of these hormones, the condition is called hypothyroidism. In adults, this condition if left undiagnosed can affect various organs and their functioning. But in children born with congenital hypothyroidism, it can severely hamper their mental and physical growth. They will not grow normally and their mental faculties will be limited. They will suffer from mental retardation and medications at a later stage will not be able to rectify the deficiency in growth.

What is neonatal screening?

Many tests are done on the baby after birth. These are normally done on day 1 or 2 after birth by pricking the heel. Unfortunately, unlike the developed world where a test for congenital hypothyroidism is a must, in India it is still not mandatory. Not only parents but many doctors are often not aware of the importance of this test. Congenital hypothyroidism if detected and addressed adequately can help the children experience normal physical and neurological growth.

While thyroid function tests are common these days for adults, no such tests are still performed on children at birth.

How common is its incidence in India?

India has 1 in 2640 babies afflicted with congenital hypothyroidism.

What are the symptoms the babies exhibit?

It is difficult to gauge this at birth based on appearance. Even those children that do not have a developed thyroid at birth completely appear normal at birth. This may be because a certain amount of thyroid hormone is transferred by the mother to the baby. Just like in adults, girl babies are more likely to have this than boy babies. Gradually symptoms may develop over the months, but it may be late by then to correct the damage done.

Who gets Congenital Hypothyroidism?

Most cases of congenital hypothyroidism are not hereditary hence every child must be tested for this condition at birth. Those mothers already suffering from hypothyroidism can take additional precautions under the guidance of their doctor.

What is the treatment if a child is diagnosed with Congenital Hypothyroidism?

The child is started on thyroid hormone replacement on diagnosis. The correct dosage of the medication does no harm to the baby/child. The child is regularly tested so that the dosage is regularly screened. The medicine is very reasonably priced. Most children can lead completely normal lives but will have to be on medication for the rest of their lives just like it is the case with adults diagnosed with hypothyroidism.

If you are expecting or know someone who is, please do inform them about this test. They must discuss this with their doctor and ensure that it is performed on their child at birth. The only way to ensure that this test becomes mandatory at birth is by increasing awareness among doctors and parents. We hope that the government will take notice and make it mandatory for the country.

26 Thoughts on “ACT – Act against Congenital Hypothyroidism

  1. This is something that all to be mothers should atleast be aware of… Will Share among my friends for sure..

  2. Rachna, When I was detected hypothyroid about 12 years ago, i searched and collected a huge amount of info for myself, which then found itself into a site called Apnathyroid which I created for layman folks. I did find out about the need to test children at birth for adequate TSH so that useful action could be taken, and a child’s life and future literally could be improved. I also checked the website of the Indian Pediatric Association.

    Unfortunately, we in India sometimes get so carried away with appearances that we ignore the content. Their site mentioned that dosages given to kids were of the order of 12 milligrams. A totally preposterous piece of info, since even for adults, the dose is in micrograms. I wrote to them pointing it out, also wrote to their then president in Delhi. I dont think anything has changed. No one really cares. Instead of getting involved in BCCI and IPL I so wish the Supreme Court would look into this and force the government into doing some thing useful for the mothers and newborns, like subsidize thyroid tests , maybe ? (Instead of giving laptops and stuff to undeserving types )

    Lack of iodine in the Indogangetic soil often causes this hypothyroid situation in newborns. I dont know what our health ministry does.

    You might want to read this :

    http://apnathyroid.blogspot.in/2010/06/newborns-and-mothers-thyroid-problems.html

  3. Suranga ji, thank you so much for sharing your information. I will surely read the link you have provided. I also hope that the government’s attention could be brought on this issue soon. The dosage given to children is not very high. I spoke with a renowned endocrinologist too and will be publishing his views in another post soon. Though expectant mothers are recommended to have adequate iodine, it must not be too high. They must avoid any exposure to radioactive iodine completely. Yes, subsidized or free thyroid tests are doable completely. What is surprising is that many private hospitals also do not do this test due to ignorance among doctors and patients alike.

  4. Wow this is news to me! With my new born around I must try n get this tested! Thanks Rachna for this post!

  5. I had no idea! thank you

  6. Yeah – we had this done for our son. Every test they asked for I said go ahead. Stem cell storage – I said go ahead. I said do every damn thing you want to do as long as it reduces risk of illness.

    • I can imagine, TF! I actually don’t even recall. I went ahead and did all the neo-natal tests that the hospital advised and hopefully the larger hospitals must be aware of this. But in private clinics and government hospitals they are not doing it for the newborns out of ignorance. And that can be a huge danger I feel to children.

  7. This is the first I have heard of this. I have a few friends expecting and will pass on the message. Thanks Rachna.

  8. This is useful info, Rachana. Thanks for sharing.

  9. Great piece of information. Thank you for sharing. Will spread the word to create awareness…

  10. I didn’t know about it. I am surprised that it is not mandatory.

  11. wow.. I didn’t know anything about this!! Thank you for the information Rachna.
    Will keep it in mind for any future references..

  12. Great information.. Thanks for sharing ..

  13. Nidhi on April 19, 2014 at 6:10 am said:

    Hi Rachna,

    Thanks for this information. I have hypothyroidism for almost 20 years. When my son was born we tested him for any such deficiency immediately and it was alright.
    The test that you are referring to is any different? Got a bit concerned.

    • I am referring to the same test, Nidhi. Glad you got your son tested at birth. As my article says that most hospitals have not made this test mandatory and thus it is often overlooked in neonatal screening.

  14. wow….I didn’t even know this test existed. don’t know if they performed on my kids…my mother’s family has history of thyroid…I will keep it in mind and inform sis about it.

  15. Pingback: The reality of Congenital Hypothyroidism in India | Rachna Says

  16. I’m not sure why bbut thnis website is loading incredibly slow for me.
    Is anyohe else having this problem or iss it
    a problem on my end? I’ll check back later on and see if the problem still exists.

Do not leave without commenting. I love a good conversation :).

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