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1607_Eleanors-Story-with-Congenital-Hypothyroidism-Hope

It is so fun to introduce you to some friends of ours, the Harman family. Anyone who knows Tim and Bethany would agree that they are servant-hearted, kind, loyal, and full of faith, and all of those qualities come through when you look at the way they love each other, parent their children, and walk through difficult days—including their daughter’s unexpected diagnosis of congenital hypothyroidism. We absolutely adore this family and are so honored to share their story here.

Bethany’s pregnancy and delivery with Eleanor were completely normal. Tim and Bethany basked in their first few days with their much anticipated, precious newborn daughter. Eleanor was cuddly and sleepy, and other than falling asleep during feedings, all was smooth.

1607_Eleanors-Story-with-Congenital-Hypothyroidism-Hope-2After leaving the pediatrician from the 4 day check-up, Bethany received a call from the hospital while they were out to lunch on their way home. The hospital staff explained that Eleanor’s newborn screening had come back with an abnormality and that they needed to go back to the pediatrician ASAP to confirm a diagnosis of congenital hypothyroidism.

Initially, it seemed extreme to go right back to the pediatrician, but they cooperated with the instructions because of the urgency of the phone call. Thinking it was going to be a quick stop, Tim and their son, Luke, waited in the car while Bethany went inside with Eleanor. It was inside the waiting room as Bethany did a quick google search on her phone of congenital hypothyroidism that her stomach dropped and the statistics began flooding in:

  • Congenital hypothyroidism (CH) is the leading cause of intellectual disability worldwide.
  • 1 in 4,000 babies are born with CH in the United States each year.
  • Delayed growth
  • Weak muscle tone

In a moment, the dreams that Bethany had for her baby girl felt shattered as she grappled with what this diagnosis would mean for Eleanor. Sobbing with fear of the unknown, she soon saw the doctor, who has since become their trusted pediatrician. The doctor kindly reassured Bethany that, though congenital hypothyroidism can have long term effects like intellectual disability, when caught early, babies can go on to live normal lives. She explained that Eleanor would need to have a blood test to confirm the diagnosis, and if positive, begin treatment right away.

After dropping off Tim and Luke at home, Bethany and Eleanor continued their full day of unexpected doctor visits at a lab to have Eleanor’s blood drawn. They were met there by Bethany’s mom, Kathy, who would become a rock for Bethany during this time. It was a grueling visit. The difficulty of watching Eleanor experience the pain of multiple pricks and having her blood drawn, along with the fresh news of her condition was overwhelming in every way. In that moment, her mom was there with her, encouraging her, and reminding her of God’s goodness.

Later that evening, as Bethany voiced her fears to Tim, they prayed together and were reminded of a profound truth: No matter how the situation turned out, Jesus would be with them. Their world as parents was being rocked, and they knew that the story was just as much about Eleanor’s future as it was about them. As they opened their hands to whatever the Lord had planned for Eleanor, peace and hope came in knowing that God was holding Eleanor, too.

They received the confirmation of the diagnosis 2 days later: Eleanor did have congenital hypothyroidism. An appointment was made right away with the endocrinologist, who again assured Tim and Bethany that Eleanor would likely live a very normal life since her condition was caught so early. The treatment was amazingly simple: a medication that she would take once a day for the rest of her life.

congenital hypothyroidismTheir next hurdle was trying to determine how to give their newborn a medication that only came in pill form. Bethany finally landed on a technique where they crushed the medicine, mixed it with a small amount of water, and gave it to Eleanor in a syringe. As solid foods were introduced, they were able to crush the pill and mix it into applesauce. Meanwhile, Eleanor continued to have regular blood work and see the endocrinologist every 2 months to check her levels and make any changes to the amount of medicine she was receiving.

As their family adjusted to their new normal, there were a number of things that kept their focus on hope. They received encouragement and prayers from their church community. Friends reached out with kind words, and their fears were quieted as they rested in their foundation of God’s sovereignty and goodness. Bethany played worship music during her days at home, allowing the words to wash over her heart with promises of the Lord’s faithfulness. And consistently woven through their days was Tim and Bethany’s commitment to each other and their unwavering faith.

During those early months of Eleanor’s life, Bethany and Tim would rejoice with every milestone from smiling and rolling over to crawling and her first words. Like many hypothyroidism babies, Eleanor hit those first milestones about a month or so behind, but she did achieve them and was caught up by age 1. On Eleanor’s first birthday, they experienced the relief of knowing that she was not suffering from any issues as a result of her hypothyroidism. Now at age 3, she is completely normal and has hit all milestones for her age.

congenital hypothyroidismEleanor does continue to have regular blood work, visits with the endocrinologist, and will likely be on her medicine for the rest of her life. However, her diagnosis does anything but define her. Eleanor is loved by all who know her and the radiant light that she is. She is fun-loving and has a gift of reading people and knowing how to make them laugh. She is smart and empathetic, and truly such a joy to be around.

Tim is a well-known Atlanta photographer. You can find his commercial work at Harman & Hall.

Showing 6 comments
  • Gayle kilcrease
    Reply

    She looks great…full of life…keep on keeping on! Love and prayers Aunt Gayle

  • Catherine
    Reply

    Such a precious child and God fearing, solid family! Thanks for sharing their story.

  • Katy Roberts
    Reply

    What a beautiful, beautiful little girl and family!! She fills me with hope! My 7 month old daughter has CH. Our stories are so similar. I remember the exact phone calls and feelings you are describing and am currently in the first year–constantly worrying about dosages and if she is developing and if she is delayed. We were at the endocrinologist today for one of our quarterly checkups and I came home worrying and needed some encouragment. Thank you! I feel like I have no clue what I’m doing but know my husband and I are our daughter’s only voice at this time in her life. I have never read a faith-based story on CH. I pray for my Lily every day as I give her that precious medicine and know that God has her wrapped in his arms but it’s still hard to always have peace and to know the right questions to ask. I am wondering if I might be able to reach out to this mother and ask her a few questions? Maybe through email? I would love that!

  • Malahi
    Reply

    Hello God bless you and your family. My son is 10 days and and was recently diagnosed with this frightening disorder. Can you please contact me and my wife when you can.

  • Jlynne
    Reply

    My daughter was 11 days old when diagnosed with congenital hypothyroidism. She had jaundice and was on light therapy at day 3, we didn’t know why her bilirubin levels were so high. We had to do daily blood tests but she was released on day 3, and we did the light therapy at home and went into the peds daily for heel sticks. Her poor heels were brutalized! Her pediatric screening was so severe they made calls from the state labs to my pediatrician by the time she was 10 days old and they got us into an emergency appointment at the closest children’s hospital with a pediatric endocrinologist the next day, something they said didn’t always happen in a timely fashion then and we were extremely fortunate. She is now 23 and graduating community college next week and heading to a state college to further her education. It’s been an interesting life. My daughter’s earliest baby pictures looked much like Eleanor’s, with the ‘pumpkin’ glow of jaundice. Back then you couldn’t just google the condition. 23 years is a huge difference in technology and ease of gathering information! Glad to see she is doing well!

  • Erica Crozier
    Reply

    I also have congenital hypothyroidism I am 41 years old and I live a very full normal life. There is hope

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