Noella’s Journey With Congenital Hypothyroidism
Something I haven’t shared with many people, outside of our family, is Noella’s diagnosis of congenital hypothyroidism. It is something that we have kept relatively private for our sweet girl, mostly because she is not sick or suffering, and it has no affect on the quality of life we provide for her.
However, if I am being completely honest, this is apart of her journey and our journey through parenthood, so here we go.
When Noella had her first newborn screening done, they received results that made them worrisome of her thyroid’s ability to produce hormones. When they retested on the second newborn screening, her levels were still alarming so we immediately went to get her blood work done that same day. Her pediatrician called with the results letting us know that her levels were not where they needed them to be and they scheduled us an appointment with a pediatric endocrinologist for the next day.
The new endocrinologist educated us on her diagnosis. Noella had what is called congenital hypothyroidism.
Congenital hypothyroidism is when a newborn/infant is born with the inability to produce normal amounts of thyroid hormones; 1 in 3000-4000 babies are born with this condition. If you are unaware, thyroid hormone is important to brain development and growth, and is crucial in the first few years of a child’s life.
Symptoms of hypothyroidism in infants are poor eating habits, excessive sleeping, weak cry, constipation, and prolonged jaundice after birth. Once we got the diagnosis, all of these symptoms made since. While hers weren’t extreme they were there. We realize that now, even more, remembering the extra day we had to stay in the hospital due to Noella’s prolonged jaundice. In simplest terms, she wasn’t the happiest baby that first week which made life a little more exhausting.
Fortunately, we caught it early and received a treatment plan in an efficient amount of time, so that Noella would not suffer from her lack of thyroid hormone. Our treatment plan was simple, we would give Noella her prescribed dose of medication everyday for the next three years, while returning for appointments every three months for repeat lab work and a checkup.
And although it sounded simple, it really wasn’t. Her medication is in the form of a pill, meaning we have to crush it up, put it in the tiniest amount of milk, and give it to her orally through a syringe. Because this medication is best absorbed on an empty stomach, I have to make sure she hasn’t eaten for at least two hours before and doesn’t eat for at least 30 minutes after. For a tiny, starving newborn baby this was an impossible task. In the beginning we were balancing figuring out how to take care of our fresh new baby, and now we had to add in balancing her eating times and giving her medication. It was a constant battle of making sure she didn’t spit it back up, worrying if we had waited for the right time frame, worrying if it was working. As an already stressed momma, I was even more stressed.
Then came time for her first round of blood work and came my most devastating moment as mother thus far. We took her to the clinic suggested by her doctor and you could tell the first phlebotomist was terrified to be drawing blood from a small, three month old baby. She brought in help, which was a little more reassuring but I was still so anxious. I won’t go into more detail from there but I never want to hear my baby scream that way ever again. It was heart wrenching and I wasn’t even in the room— I let her daddy hold her during that process because I was crying just as much as she was. I just wanted to take her place, to protect her, but I knew that this was important to her quality of life in the long run.
BUT, when we went back for the checkup and results, her doctor was pleasantly surprised. Her levels were responding to medication, and her thyroid was producing higher levels. We were able to lower the dosage of medicine she was receiving!
This last week we had her third appointment, at almost 6 months, and we got the same response, lowering her medicine for a second time! Some babies with this diagnosis aren’t able to be weaned off until at least 3 years, and others are never able to be off their medicine completely. With this progression in Noella’s thyroid, she is projected to be off in a little over a year if it continues to respond the way it has!
As time has gone on we were able to find a better routine with the medication, giving it to her as soon as she wakes up and then playing with her for 30 more minutes or so. She does so much better and has been so much happier as she has gotten older, something I know to be common in a lot of babies! I also requested that we were able to get her blood drawn on the pediatric floor of our hospital, rather than that clinic, and it went so much better. They were able to get enough blood by pricking her foot instead of a vein in her arm, and she didn’t cry once as they collected!
I am so proud of my baby girl. She has already proved how strong and resilient she is. God answers prayers, and has protected her through her diagnosis of single umbilical artery in utero, and now her diagnosis of hypothyroidism. We are so blessed by answered prayers in that she will outgrow this condition and one day, even sooner than we first projected, be completely off her medication. He is the greatest Healer and we put all our faith in Him, that He will provide her the healthiest, happiest life. She is brilliant, and perfect, and unaware of this portion of her journey. Hypothyroidism does not define what she is or will be capable of.
This has also been another learning opportunity for us as parents, of how we will react to such diagnosis and how we can learn to balance our responsibilities as her caretakers. I couldn’t be more proud of our growth through parenthood, or of Noella for her ability to defy odds even at 6 months old.
