Tag: hospital

Congenital Hypothyroidism: Letter To My Daughter


To my sweet little girl… On Monday, September 17th, your Daddy and I showed up at the hospital to give birth to you. We didn’t know what we were having but were pretty convinced you would be our second boy. To our shock and amazement, our sweet doctor said you were a girl. We all cried tears of joy that you were finally here safe and sound. We had a couple scares during pregnancy but we made it to your due date. We were so happy to finally name a baby girl. You were so beautiful with a full head of dark hair and gray blue eyes. Your temp was low and you had a broken clavicle but we were able to take you home the next day. You were such a great baby.

On Friday, September 21st, at 4:06 pm I got a call I will never forget. I was in the glider nursing you and your Pediatrician called. She started to say words like blood work, abnormalities, and Congenital Hypothyroidism. I’m sorry, what did you say? I was in shock, and couldn’t grasp what she was telling me. All I could do was look down at you and think, this isn’t possible. This isn’t possible for anything to be wrong with my beautiful little angel. I had to have her repeat everything to your Daddy because I just couldn’t process it.

They had gotten your bloodwork back from the hospital and realized that your thyroid numbers were not in the normal range. Your thyroid was either not working or working very little. They believed you had Congenital Hypothyroidism. She said to take you to the hospital immediately to have your blood retested. By the time we arrived at the hospital we were terrified in to silence. From the things your pediatrician had told us and what we read on the internet we learned how devastating this diagnosis could be. Congenital hHpothyroidism is the leading cause of mental retardation in babies. These babies wouldn’t develop mentally or physically. How is this possible…?

My heart broke for you as you cried getting your blood drawn. You were so tiny and precious. While we were in the lab, we received another phone call from your Pediatrician. She had already called Childrens Hospital and spoken to a Pediatric Endocrinologist. I was told you were to start medication immediately. They sent us for blood work just as a formality. Your numbers were so bad that you probably didn’t have a thyroid at all. You were to take two pills tonight, two in morning, two the next day and one everyday for the rest of your life. Your blood would need to be drawn on a regular basis to make sure that your levels stayed in the correct area. Was this happening? I couldn’t believe what I was hearing. This was just a bad dream. We had never heard of Congenital Hypothyroidism.

We were heartbroken. We were devastated. You would have to take this medication for the rest of your life. Your Pediatrician was reassuring that since it was found early it was manageable. Getting the medication quickly and taking it consistently was key. If you didn’t get this medication your brain wouldn’t develop, your growth may be hindered, it was dire. Hours, days, weeks matter with this diagnosis and receiving medication.

You started medication on the fourth day of your precious tiny life. It was hard to grasp that one pill every day was so critically important to your development. One pill could completely change your life.

It is an unbearable pain to know that something is wrong with our precious little baby and we can’t solve it. We can’t make it go away. We love you so much and it breaks our heart when we hold you in our arms, look at you, and know we are helpless. We have given you a pill everyday since. We have your blood drawn again next week to see if the medicine is working and we have an appointment with the Pediatric Endocrinologist in a few weeks. We are holding our breath and worried sick until then, hoping that your meds are working.

I am so, so, sorry we can’t fix this. I am so sorry that we can’t make it go away. We love you so much and you have brought such joy to our lives in just the nine days you’ve been with us. You are our precious baby girl. Please, please let the meds be working…