Hi, My name is Jeylis and I have created this group/community in support of those mom's whose kids were born and diagnosed with Congenital Hypothyroidism. I was born with Congenital Hypothyroidism myself and did not get diagnosed with it until I was 8 months old. Here is my story:
Hi, first of all...I want to tell all those moms with babies who were born with Congenital Hypothyroidism that there is always light at the end of the tunnel...never give up hope! My name is Jeylis (Haylee), I was born in La Habana, Cuba in 1990 and I was born with Congenital Hypothyroidism...However, nobody knew what I had until I turned 8 months old. I AM A MIRACLE CHILD because my thyroid glands are basically DEATH...I was born with no thyroid hormone at all...my thyroid glands do not work at all...0% working...My parents were devastated because they knew I had serious health issues...and for the worse, they did not know what those were...I was born with high head circumference, my tongue was very big and protruded, my hands and feet were really cold, and I had a hernia in my bellybutton...nobody knew what I had...my parents went from doctors to doctors...even medical students analyzed me and still...no answer..it wasn't until they ran into a doctor who he immediately knew what I had...he told the other doctors that I HAD CONGENITAL HYPOTHYROIDISM...and he called and contacted Endocrinologist DIANA CHON...who became my doctor and attended me until I left Cuba at the age of 11 years old in 2001. WHY DIDN'T ANYONE KNOW WHAT I HAD? WHY DID NOBODY THINK THAT CONGENITAL HYPOTHYROIDISM WAS POSSIBLE? Well, my thyroid tests got lost...every single newborn goes through several tests to make sure that all their systems are working great and my thyroid tests got lost...that is why nobody thought about Congenital Hypothyroidism a diagnoses. I got diagnosed with it when I was 8 months old and they put me on LEVOTHYROXINE 100 MICRO-GRAMS and a week later after taking the medication...my body completely changed...my protruded tongue was thing of the past, my herniation of my bellybutton closed and disappeared, my body temperature increased to normal body temperature, I was no longer lethargic, in fact...I drove my parents crazy with how active I was so soon, and I normally developed. My development was normal...I reached puberty at age 12 without any problems, I have always had normal periods, never missed one, I am in college right now and did not suffer any mental retardation at all in fact I have almost perfect grades and I am studying Nursing. In addition, I have never had any weight problems.
I found out about this blog as I got interested in my condition and I thought it would be nice if I shared my story with you to at least give you all hope. Your babies will be fine...just dont ever give up hope and DO NOT STOP INSISTING....you are the ones who have to insist and not give up. never give up. Yes, I might be a miracle but miracles do exist and your baby could be one...and will be. FEEL FREE TO CONTACT ME...IF YOU NEED SOMEONE TO TALK TO..I AM HERE.