I am thrilled to share this touching letter with you from a mother to her daughter. Gabby, like my sons, was born with Congenital Hypothyroidism. Like all of us mothers and fathers who hear those words spoken about their newborns, Gabby’s mother, Meghan, was so worried about what life would be like for her beautiful newborn daughter. Well, a year passed, and this is what Meghan has to say…
Hi, everyone. We’ve just celebrated our baby girl’s first birthday. I write letters to my children on their birthdays, and I felt this was a great one for sharing. Gabby’s one year birthday letter is for the day she leaves home, telling her story and diagnosis from the beginning. It brought me to tears many times thinking about the past year and the worry I felt. If you are just getting this diagnosis or any unexpected diagnosis, I want you to know that it is all going to be okay; your baby is going to live a beautiful life, and we are all here to help along the way. XO, Meghan
My Dearest Gabby,
Today marks one year baby girl.
1 year, 12 months, 365 days, 8760 hours, 525,600 minutes, 31,536,000 seconds…. No matter how I define it in my mind, it has passed all too quickly. It’s like time has cheated us and somehow the world is spinning faster. Like any mama I wish I could relive every precious second of your first year forever. Those perfect moments every mama knows of rocking and singing you lullabies, being cuddled up when you fall asleep, and not wanting to ever move again. The sound of your baby laughs and softness of your sweet baby kisses are the moments that made the months of 1, 3, & 5 a.m. feedings less exhausting and made every hard day or sleepless night easy.
The day you were born, May 1st of 2014, was the National Day of Prayer. It seemed fitting as I had prayed faithfully for you for years prior to this day. On this day, I would hold you in my arms and I would kiss your perfect face for the first time. Little did I know the countless nights I would spend praying myself to sleep, pleading with God on your behalf. You would teach me more about faith and trust in God’s plan in one year than I had learned in the 28 years prior.
At 11 days old, you were diagnosed with Congenital Hypothyroidism. It is the most common preventable cause of intellectual disability and growth failure. Millions of people live with thyroid issues every day, but for an infant, levels must be regulated and maintained within the first 30 days to avoid permanent damage.
It took 11 days for the lab in Montgomery, Alabama to test your PKU newborn screen which would reveal your TSH level was off the charts at 409, when it should have been well under 10. They would then contact the Children’s Hospital of Birmingham Pediatric Endocrinologist, who would contact your pediatrician in Tuscaloosa, who would make the phone call on a day I will remember for the rest of my life.
We were sitting outside in the late afternoon enjoying the summer sun when the phone rang. The nurse on the other end may as well have been speaking Spanish….T4, TSH, FreeT4. I didn’t understand what numbers meant what or what all of this meant for you. We rushed to the hospital for labs as instructed and started medication within hours.
The weeks and months following I would spend countless hours researching every treatment option across the globe. We would meet with your specialist, a pediatric endocrinologist at Children’s Hospital. She learned quickly your mother was a force to be reckoned with as I questioned her about advanced European animal transplant research and the success with thyroid gland stem cell transplants not yet studied in the U.S. Your daddy was patient and sat quietly at every visit, allowing me let me get the answers I so desperately needed this past year. You have endured more needles in one year than I have in my entire life. You have been brave and strong through it all.
The only comfort I had the day we received your diagnosis was learning that I wasn’t crazy. I had cried uncontrollably for 11 days, even to doctors, and I was overwhelmed with frustration for not being able to put into words what my motherly instinct was telling me. My closest friends would tell you I knew something was wrong before you were born. Thinking back over multiple conversations before delivery, I just knew something wasn’t right. They did regular stress tests late in pregnancy, because I wouldn’t feel you move for days at a time. They said you were just a hard sleeper, but I wasn’t convinced. Even after delivery, everyone, including doctors, friends, family and even your daddy, thought I was nuts….having postpartum, baby blues, or maybe I had just lost my mind. I’m sure I seemed as if I was having a hormonal breakdown. I was written a high dose prescription anxiety & depression medication and told you were fine.
A mother’s intuition is a STRONG and REAL thing. They knew you were fine, and I knew something was wrong. I felt the deepest guilt because of this. I would hold you, looking over your perfect beautiful body with tear filled eyes and was forced to believe maybe everyone was right and there was something wrong with me. You were perfect and still are, but your mama could feel something everyone else couldn’t. They fed me pills and I fought an 11 day internal battle knowing with every fiber of my body something wasn’t right…..
You never cried and when you tried it was like a whisper, hoarse and low. You slept 20+hrs a day, only staying awake for moments at a time. You didn’t open your eyes even when taking a bottle; family members joked you were just a sleepy lazy girl, getting your beauty rest. I would call your name countless times and you wouldn’t wake. I would walk you in the sunlight just to see your eyes open for a moment and I carried my phone or camera 24/7, so I could document every moment you opened your beautiful eyes.
Nursing felt impossible; your body didn’t allow you to stay awake long enough, so every 30 minutes or so, you would be hungry and then pass out within 2 minutes. You were losing weight and I was staying awake for days at a time doing everything I could to help you back to birth weight. The doctors told me you were just a good baby: “She sleeps all day and doesn’t cry. Honey, consider yourself lucky.” Frustrated isn’t the word; I’d take the meds to numb the frustration. I don’t blame the doctors for thinking I was nuts, because these signs and symptoms (cold extremities, hoarse cry, herniated umbilical, lethargy, low weight, exhaustion, etc.) for CH are nearly impossible to detect and piece together with a seemingly healthy infant.
I felt like the worst mother in the world when the pediatrician tried to give me tips like rubbing a cold washcloth across your forehead, so you would stay awake to nurse or take a bottle. They strongly encouraged me to feed you as often as possible and said that getting you back to birth weight was their first priority. What did they think mine was? I couldn’t remember the last time I’d even slept and they made me feel like they were questioning if I was feeding you when that’s ALL I’d been trying to do for days! I had even started pumping and supplementing only because in my mind you wouldn’t have to burn extra calories trying to nurse.
That phone call changed our lives forever. Without the PKU newborn test (I didn’t even know they did) we might still be struggling for a diagnosis, and the effects would be irreversible and lifelong. I had a lot of anger in the beginning when I learned that other states get these results within 2 to 3 days and some states within hours. Just thinking of the hell we went through to wait 11 days for the labs. It was too long for me and especially too long for you.
Still, I am thankful. I remind myself to pray for the mamas in countries that don’t have this testing available. I pray she listens to her intuition and keeps fighting back for answers, and I pray they don’t write her off or silence her with medication. We have had amazing doctors at Children’s who were aggressive and persistent to get you proper treatment.
We had hoped your thyroid was just nonfunctioning and at some point would work but we learned at 5 months old after an ultrasound that you were born without a thyroid completely. This means medication and blood work will be lifelong. This will all be okay, too. You are strong and handle needles with ease, even when being poked at multiple times to find a vein in your tiny arms…this is something that still breaks my heart, but you are strong.
Remembering medication every day for a baby was intimidating at first but has become our normal life routine and thankfully we didn’t miss a day your first year. Doctors cautioned us that delays were still possible and that getting what’s considered normal levels was something to work towards over time. Yet, you have wowed them with your ability to normalize levels in every dosage change for every growth spurt.
Never have I prayed so much or so hard for one thing in my life and I hit my knees often with thanks to God for His protection and His love and for trusting us with you. Every time a doctor says your progress is incredible, I know whose hand is working in your life—the One who created you and made you so unique, so joyful, and so beautiful. You will have a testimony to prove His work in your life from day one.
You may have been born without the thing that makes you grow, my sweet daughter, but looking at these photos at how beautifully you have in fact grown this year, I assure you that you are a miracle and The Lord has shown us that He is the ultimate physician.
As I write you this letter, I am imagining giving it to you on the day you move away. You are off to college, or studying abroad, or doing something incredibly exciting on your own for the very first time. I want you to know what a joy you are to your father and me.
We have loved you since the moment we learned we were expecting and have fought so hard to give you the life you deserve. Now that you are all grown up and know of the first days of your life, you must promise to always take care of yourself. Even if you don’t want to, you must remember your medicine, you must get your blood work on schedule, and you must call your mother. If you don’t, I will be your middle- aged roommate faster than you can call your daddy to tell him to calm me down.
Mama’s advice for life outside of home-
Enjoy every new experience. Remember we are proud of you no matter how many mistakes you make. Messing up is part of life; it’s what you do after that defines you. Face your fears head on. Don’t be afraid to take chances because living with regret is no way to live. Have fun but make time to study. Work hard, as Pops would say “It builds character.” You may move away from your friends but keep in touch. A good friend is priceless. Call your brother; he will always love you and I pray you are still best friends. Be there for each other always. Say sorry when you’re wrong even if you don’t want to. Wear sunscreen. Stand up for yourself. Dance like nobody’s watching (something Mags taught me). Make time to help others. Keep prayer in everything. If a boy tells you he loves you, he’s a liar because no boy is allowed to love you until your daddy and I say he can and, angel, bad boys will never be good enough for you. Trust me. We’ve prayed for the man you will marry your whole life; when God decides to send him you will know.
Most importantly, love yourself and never let anyone make you feel bad about who you are. You are unique and beautiful in every way. Surround yourself with people who love you for you.
My sweet precious Gabby girl, I love you more than words. No matter the miles between us,
Mama is always here.
Meghan M. is the busy mom of Gabby and David Scott. She and her husband, Kevin, are raising their family in Alabama, where they live, work, worship, and play. Meghan has not publicly shared her family’s story before now. She graciously shared her letter to her daughter with me and allowed me to share it here on Thyroid Mom.
If you have a child with Congenital Hypothyroidism, I imagine you are thinking that Meghan took the words right out of your mouth. Her story is so similar to what so many of us have experienced. What Meghan and I both hope is that if you have just gotten that phone call from your child’s doctor diagnosing them with Congenital Hypothyroidism, that you know you are not alone. For those of you who do not have a child with Congenital Hypothyroidism, what we want you to know is just a little of what we have been through and why we are so proud of every thing our brave kiddos accomplish…because we know what they have fought against since birth. It’s also why we are so passionate about sharing, so that we can help other parents and children. Meghan, from the bottom of my heart, I thank you for allowing your very personal story to be shared here where it will help so many other families!
-Blythe aka Thyroid Mom