“

Behind the dim unknown, standeth God within the shadow, keeping watch.” 

James Russell Lowell, “The Present Crisis.” 1844

Natalie’s blood tests must have been completely out of the range of normal because I was told that it was “imperative” I take her to the hospital “immediately.”  So my intuition wasn’t faulty!  I walked through the doors of Children’s Hospital Medical Center in Boston that warm June morning in 1977 and my life changed forever.  I just didn’t know it yet.  What I knew was that everyone wanted to hear what I had to say now.   As the physicians, senior residents, interns, fellows and more interviewed me about Natalie’s short eight month life, I began to piece together the puzzle of my little one’s malady.

We started at the beginning.  Natalie had been hypoglycemic at birth, but the doctor said that was typical of big babies.  Natalie weighed in at 8 lbs 13 ounces.  It broke my heart to leave Natalie in the hospital those two days.  She was fed formula every few hours and when her blood tested within normal limits I brought my baby girl home.

Nursing was difficult for me. I was a 20 year old college student, far from family, who had never been around anyone who nursed their baby.   It did not seem to satisfy her.  I gave up after a few weeks and fed her the Enfamil that was sent home in my bag of diapers and lotions from the hospital.  Natalie sucked on the bottle desperately…like there may not be enough.  As an infant it was not unusual for her to finish 4 ounces of formula, fall asleep and be hungry in a few hours.  I had been advised by her pediatrician to stretch out the feedings.  When I tried to follow the doctor’s orders Natalie would scream and cry like she was in pain.   The crying was followed by a deathly calm….almost eerie.  When I did feed her she seemed weak at first and then would fall asleep.

As the doctors asked me questions I remembered more. Her temperature seemed hard to maintain; hot with perspiration at times, then cold and clammy.  I took my mother’s advice to offer Natalie cereal when she was only a month old. I couldn’t feed it to her fast enough.  Natalie was nervous at feeding time. I blamed myself because of my own anxiety and feelings of inexperience.

It was discovered very quickly that Natalie could not maintain a normal blood sugar level because of some dysfunction in her endocrine system, so she was fed formula around the clock along with the meals she enjoyed eating, augmented by an IV of glucose when she needed it.   I was nervous and happy at the same time.  In spite of IV’s, blood sticks and constant palpation of her not so tiny liver she was a happy girl.

The doctor we needed to see was out of the hospital for the week, but my concerns were finally being taken seriously.  I felt safer in the hospital, but there was still no diagnosis.

Lesson learned:    By the grace of God go we.