Support for Those Living with Adrenal Insufficiency

Chance the Miracle Child

Chance the Miracle Child

My husband and I were not supposed to be able to have kids so, after five years together, we were completely blindsided when we found out we were pregnant.  The pregnancy went relatively normal but then about one and a half weeks before he was due Chance decided it was time.  We rushed to the hospital and I spent 12 hours in labor, when the kiddo was finally delivered he came out jaundiced, one hand tightly wrapped around his umbilical cord, and not breathing.  After a bit of work the doctors and nurses got him breathing and set him in the portable infant bed for phototherapy.

My husband had the opportunity to give him his first bath and then he was whisked away to the NICU.  I was finally able to see him several hours later, and the millions of attempts at feeding began.  He was lethargic and refused to eat, he ended up with an IV in his head and we struggled with him in the NICU for a week, they let us go home Friday, one full week after delivery.  We  enjoyed him for two days, took him to his pediatrician on Monday and immediately were back in the NICU.  His weight was dropping, he still wasn’t staying awake for any amount of time, and they   were worried.  His doctor ran every test he could think of, including genetic ones, and found nothing.  By the end of the second week we were allowed to take him home once again, this time on oxygen.  He stayed on oxygen for the next four weeks before finally coming off of it.

Nicu_ChanceWhen Chance was six months old I noticed his left eye seemed to drift when he was tired.  We discussed it with his doctor and were sent to Phoenix Children’s Hospital to see a pediatric Ophthalmologist.  It was determined that he had Optic Nerve Hypoplasia (his left optic nerve is severely underdeveloped to the point of blindness).  The Ophthalmologist requested that we have an MRI done on the then 8 month old infant to determine what the condition was caused by.  The scan showed the cause to be an under developed pituitary gland.  Both doctors suggested there was nothing that could be done to help with this and we were told to keep watching him.

We moved to Utah and found a new pediatrician.  At two years old he came down with croup and the emergency room gave him two shots of steroids before sending him home with a nebulizer, it took him much longer than expected to recover from the sickness. I addressed my concerns with the new pediatrician; I had become concerned with Chances reactions to sickness as well as his growth.  The doctor brushed off the concerns but I felt strongly enough that a year later we found a new doctor.  This doctor listened, she was aware of conditions that could be caused by the pituitary not functioning and she referred us to the top pediatric endocrinologist in the area.  Chance was subsequently diagnosed with hypothyroidism, growth hormone deficiency, and secondary adrenal insufficiency.

We were, and are, so fortunate that Chance has a strong constitution, he rarely gets sick, and I was a stay at home mom so was able to give constant care and monitoring.  The doctors had no idea to even test for AI, they though if the adrenals were whole then they must be functioning.  That very first NICU doctor ran so many tests, dozens of them, but wasn’t familiar with the condition so didn’t put the symptoms together with the diagnosis.

A few years ago at six years old Chance broke his femur. He was walking on the ice and slipped, I carried him inside before realizing his leg was broken.  We were educated and one year veterans of dealing with his Adrenal Insufficiency by this point, we emergency dosed him with his meds and chose to drive him to the hospital rather then call the ambulance.

Many would question this choice but ambulances and emergency care individuals do not have the training (OR the emergency medications) to treat an individual with adrenal insufficiency.  Which is the better choice; handing him to people who don’t know how to treat him in crisis or taking him ourselves because we do (though we are risking other issues)?  How does a parent make that choice?

chance_8He made it to the hospital with no extra problems and the doctor there called our endocrinologist for directions on treatment.  He was stabilized and transported by ambulance to Primary Children’s Hospital where they were able to set and cast his leg while maintaining appropriate medication dosage and monitoring.   We were, yet again, blessed and fortunate and Chance made it through the experience with no complications.

We fight his school yearly to carry his emergency shot because the ambulances won’t, we have documentation and medications everywhere we go in the hope that when the next occurrence happens we are prepared.  Chance is now 8 years old, he plays soccer and rough houses with the other boys at recess.  He had the start of a crisis at school this year, he passed out in class and his teacher (bless her) carried him to the front office where they emergency dosed him and called 911 (and us).  The school, teacher, and kids in his class suddenly had a crash course reminder that with him scary things can happen in a blink.  A quick trip to the hospital and he was home and fine, and again we were blessed that people responded as needed.

Our life and his will be spent counting the times like these when blessings happen and worrying about the times when they might not.


From AIU:  Make sure you’re child’s school is ready for an emergency visit our School Resources page an get your free downloads.

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