Congenital Hypothyroidism: Don’t be afraid, it’s just a condition - a life changing story.

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Are you familiar with Newborn Screening? It’s a test wherein a few drops of blood is collected from the baby’s heel at least 1-2 days after birth and placed on a special type of paper and would be sent to laboratory for testing and analysis.

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When I gave birth to my daughter 4 years ago, I haven’t thought this screening would change our lives. Our Newborn Screening arrived 2 weeks after my baby was born, earlier than usual. I was crying the whole time when I found out she is positive for Congenital Hypothyroidism. I don’t know what to do. I even don’t know what that means. I quickly texted my husband so he can google it out. I also read that pink brochure and found she can be mentally retarded. The other day, went to the lying in to repeat the Newborn Screening, hoping and praying everything was just mistaken. The result arrive almost a week and it was still positive. I received a call from NIH Institute and they scheduled us for check up tomorrow. Since the hospital is too far, and we are scheduled at 8 o’clock in the morning for laboratories, we leave at 4 o’clock with a 3-month old baby. We arrived at 5:30 and don’t know what to do. The guard told us to get blue card (this is the card PGH – Philippine General Hospital used for new patient) for our checkup. The hardest part was the laboratory. When they allowed me inside, seeing your baby crying and turning red while waiting for 5ml blood to be full.

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The NIH called again, and we are in the wrong place. We have to do the laboratory at Manila Endocrine Laboratories where the result will be available soonest. I’m afraid that they will get blood sample again so we get the first blood sample and transfer it. The result arrives the next day and had our follow up checkup. Her TSH (Thyroid-stimulating hormone) result was really high while the ft4 (free thyroxine) was low which indicates her thyroid is not working correctly.

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According to the Pediatric Endocrinologist, Congenital Hypothyroidism (CH) is a condition wherein the production of thyroid hormone is inadequate at birth. We can determine the status of the thyroid gland through thyroid scan where radioactive iodine is injected into a vein that would serve as the tracer that signals the special camera to determine the size, shape and location of the thyroid gland. It can also determine if the thyroid gland is overactive or underactive. She was given 50mcg levothyroxine sodium – a thyroid stimulating hormone that time. We are scheduled for check –up every 2weeks while adjusting the dosage according to her lab results.

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Although the laboratory and check-ups are free because we are in a public hospital, still we need to bear with the hassle of travelling from Laguna to Manila every time. My husband needs to leave for work because I need a companion during laboratory. We also have to arrive as early as possible because of the long queue on check-ups. After several months, we finally had a normal lab result and my daughter’s check-up was reduced to every 3 months. This was a relief since we are running out of funds for the laboratory that cost around P 1,300.00 – P 1,500 (we got free lab on our first 3 check-ups) plus, the travelling cost.

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At 3, we are asked for thyroid scan so that we can determine the status on her thyroid gland. We stopped her medication for 1 month so that we can determine whether her gland can sustain the needed hormone for her development. In my daughter’s case, her thyroid gland, although present, is ectopic (under the tongue). She still needs the medication because her lab results fluctuate. It can be lifetime medication.

Up to now, she is still on 50mcg levothyroxine sodium every morning, 30 minutes before meal. This medication is a lot to be thank for. It only cost P4.00 each on generic drugstores. Imagine, P4.00/day for your child to be normal.

My advice for future parents/mother is to consider your baby to be screened. My case is only one of the five disorders that this screening can detect and if treated properly, like my daughter, can be normal. Don’t compromise your baby’s health for a small amount. This screening change our lives and I will be thankful for it forever.