Bittersweet beautiful days.

Patrick returns to work next week, and I will miss him so much when he is gone. The past week, Milla’s first week of life, only reminds me how much I love my husband. Despite any disagreement or passionate discussion we might have about everything from Kierkegaard to raising children, he is the only man made just for me, like the Liz Phair song “Favorite”, it just feels right.

A beautiful, bittersweet week it has been. Beautiful because we welcomed Milla into our family and bittersweet because, a few days ago, we learned that Milla has neonatal congenital hypothyroidism. One phone call from our pediatrician’s office turned the lightness of engorged breasts and baby banter to the heaviness of health problems. Our joy is tempered by concern and uncertainty. We are fortunate that newborn screening caught Milla’s extremely high TSH level (over 400) early enough to begin treatment, but we still do not know how this has affected or will affect her development.

I’ve kept checklists running through my head, checklists I revisit as I watch her precious little gas grimaces following a rigorous nursing session. (She is my first barracuda.) We know that her condition is severe enough to warrant immediate medication with thyroid hormone. How do all the lists and symptoms apply to little Milla? What do the numbers mean? What are the physicians trying to tell us when they wrinkle their foreheads and move on to the next question? What should we hope for and what should we just accept? I can’t find any answers so I return to the comfort of checklists.

Infants with severe hypothyroidism often have a distinctive appearance. Symptoms may include:

  • Puffy-appearing face – Yes, Milla looks puffy.
  • Dull look – Is this truly a medical description?
  • Thick, protruding tongue – No. That would indicate a misplaced thyroid and it seems fairly clear that Milla is missing a thyroid altogether.

This appearance usually develops as the disease gets worse. The child may also have:

  • Dry, brittle hair – Milla’s hair is so soft, rich, and dark.
  • Low hairline – Perhaps, but Micah had a low hairline as well.
  • Jaundice – Milla does have jaundice, but not enough to warrant any heel pricks from the doctors or nurses.
  • Poor feeding – She is a wonderful nurser with a voracious appetite. In fact, she already regained the 5 ounces she lost in the hospital plus 2 more.
  • Choking episodes – No comment.
  • Lack of muscle tone (floppy infant) – Not according to our pediatrician.
  • Constipation – She was constipated for an afternoon a few days ago, but has been regular since.
  • Sleepiness – Yes.
  • Sluggishness – Yes.
  • Short stature – She shares the same height stats as Micah.

Early diagnosis is very important. Most of the effects of hypothyroidism are easily reversible. Replacement therapy with thyroxine is the standard treatment of hypothyroidism. Once medication starts, thyroid blood tests are regularly done to make sure levels are within a normal range.

Milla received her first dose of thyroxine yesterday and her second dose this morning.

Hypothyroidism in the newborn may be caused by:

  • A missing or abnormally developed thyroid gland
  • Pituitary gland’s failure to stimulate the thyroid
  • Defective or abnormal formation of thyroid hormones

Incomplete development of the thyroid is the most common defect and occurs in about 1 out of every 3,000 births. Girls are affected twice as often than boys.

We suspect from the suggestions and coded speak of the medical establishment that Milla is missing a thyroid gland. There is no history of missing or broken thyroids in either of our families.

Very early diagnosis generally results in a good outcome. Newborns diagnosed and treated in the first month or so generally develop normal intelligence.

Untreated, mild hypothyroidism can lead to severe mental retardation and growth retardation. Critical development of the nervous system takes place in the first few months after birth. Thyroid hormone deficiency may cause irreversible damage.

We are hoping for the “good outcome”, but we are also accepting the fact that we may not know for sure what such an outcome means. What we do know, however, is that our family will continue to blossom in its own, wildflowery way and we are overwhelmed with happiness in celebrating the one-week birthday of our littlest munchkin.

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