Last May 6, 2016, I gave birth to my third (and last) child. Like his siblings, he was delivered via C-section and we needed to stay at the hospital for 4 days. Looking at my baby, like most (if not all) mothers, what I see is perfect, handsome little angel who loves to sleep a lot. Yep, even when his nappy’s full of poop, he’s still asleep. Even when all the babies are crying, he’s still sleeping. The only time he’s awake is if he’s going to eat.
Almost a week after we’re sent home, one of the nurses called us, she said there’s something they need to check on my baby and it’s about the result of his newborn screening. The next day, we’re back in the hospital and the nurse said the my baby’s result for CH (TSH) is slightly elevated and they need to redo the test. She showed me the result. Normal is 15, my son’s result is 15.18. I was confident that the second test will be OK ’cause my baby’s fine and it doesn’t look like anything’s wrong. Besides, .18 is not that much and it was taken when he was just 2 days old.
While she’s taking blood samples, I saw this poster comparing two kids with congenital hypothyroidism, one was treated early and the other one’s not.
Let us start with this picture. Please take a look. The boy in the stroller is Benjie. He was 14 years old at the time this picture was taken. He could not walk, talk nor sit alone. His mental age was placed at 1 month old. When he was brought to the hospital at age 12 years old for diagnosis, his fontanels were still open. He is now 23 years old.
The girl who is standing beside him is Rina. She was 8 years old in this picture. She is now a second year college student. She lives a normal life and is at the top of her class.
Both children had problems at birth which did not manifest physically when they were born. Both have congenital hypothyroidism. Rina had newborn screening at two days of age. She was diagnosed, treated and until this time is continuously taking a medication that costs her P8 every day. Benji was not subjected to newborn screening and was not diagnosed early enough. He only received treatment when he was 12 years old. Benji’s parents live in a rural area where his father is a seasonal farmer. His mother could not help augment the family income because all of her time is devoted to taking care of their son.
(Newborn Screening Facilitator’s Guidebook)
Seeing that poster made me feel worried because I know almost nothing about congenital hypothyroidism. As soon as we got home, I started searching about CH, the signs and symptoms, the treatment and what things I should expect.
I was trying to look for any blogs about this from anyone within Philippines but I can’t find one. Thank God I found Mandi’s post about her daughter. I kept nodding while reading that one because what she went through is same as mine and that post actually gave me peace of mind.
My son’s second newborn screening result somehow confirmed it, 20.48. We were advised to have a confirmatory testing and consult a pediatrician-endocrinologist which, according to the nurse, was only available in huge and mostly private hospitals like St. Luke’s Medical Center, Makati Medical Center, Manila Doctor’s Hospital and the like. I immediately asked if they have it in Philippine General Hospital (PGH). Of course they do!
Right now, I’m getting used to the routine that we have every time we have an appointment. Blood test in Manila Endocrine Laboratory, doctor will check if results are within normal level and she will adjust the dosage. As of now, it’s just a 25mcg tablet levothyroxine that he needs to take 30minutes before feeding. I simply need to dissolve it in a small amount of water.
We already did his thyroid ultrasound as well. His thyroid is a bit small and it could be the reason why it’s not functioning properly.
Well, one thing that I’m thankful for is that his condition is treatable and the treatment is accessible to us.