To Dr. Shane Hunt & Angelique…For Helping Some Sun to Shine

As mentioned in last week’s post, the assessment recently requested by our local Division of Developmental Disabilities was completed by Dr. Shane Hunt, with assistance from one of his interns, Angelique. When I asked Dr. Hunt if he would be comfortable with me dedicating one of my monthly gratitude notes to them, he seemed surprised. To him, I think this was just the way he felt like business should be done, but as a mom, what I saw was a professional who cared enough about what was best for my son (who is quite scared of doctor’s offices) to go out of his way and do something undeniably less convenient by coming here.

I was also deeply touched by how Dr. Hunt interacted with Tony and that he showed nothing but calm acceptance even when our little man stripped off most of his clothes within moments of the door being opened. I had gotten Tony dressed, but he really doesn’t like the way clothes feel and at this time isn’t willing to keep anything but his underwear on at home (he tolerates clothes in public because our agreement is that he can pitch them at home if he likes for now). Not everyone reacts so placidly to this, and it means a great deal to me when people do.

This assessment would have been a disaster for everybody involved in an office setting unfamiliar to Tony given the severity of his fears in that environment at this time, so Dr. Hunt and the sweet Miss Angelique, you have our most heartfelt thanks and appreciation. Thank you for chasing away some shadows in my heart.

Some Reading To Consider

I am Not a Syndrome, My Name is Simon by Sheryl Crosier

&

This Lovely Life by Vicki Forman

On the surface, it would seem like there is very little in common between the two children these books are written about. Simon was born with Trisomy 18 and lived only a few short months, whereas Evan was born 17 weeks early and died just short of his eight birthday. However, after reading them I think they have a common theme that ties them together inextricably for me: the families of both of these children, and indeed the very fates of Simon and Evan themselves, was deeply impacted by what treatments their medical providers were or were not willing to do.

For Simon, his family wanted every effort made to keep him alive as long as possible. They understood that if he survived there would be extensive challenges, and they were willing to meet them. However, despite the fact that there have been cases of Trisomy 18 kiddos surviving over a period of years, this syndrome is generally considered “incompatible with life” by much of the medical community, and what the Crosiers experienced was that providers were initially unwilling to even prescribe antibiotics for infections their son had because they felt it was more humane for him to pass on.

Evan’s mom on the other hand knew there would likely be significant challenges for her premature twins if they even survived, one of whom passed away within days, and so her initial desire was that no heroic life support measures be taken with them. In her own words, she did not “want them to suffer.” Her medical team told her this was not an option, that there was a moral obligation to provide every chance for her children to survive. The result of the side effects of these treatments for Evan was a life marked by blindness, constant seizures, multiple invasive medical procedures, severe intellectual disability, developmental delays (first steps at age 5 years), an ultimate death from a bowel obstruction related to the feeding tube he required as a baby, and a mother who loved and championed him fiercely through all of it.

I wonder if the aggressive care plans proposed for Evan would have been the same if he had been born that prematurely with a rare trisomy. The very lives of families and individuals with disabilities of any kind can be dramatically shaped by the care the medical community offers them. In recommending these as worthy books to read I am not endorsing every aspect of the authors’ individual points of view, but rather saying I find their experiences can help illuminate an intersection of modern medical practices for kiddos with significant disabilities and the impact those decisions had on the individuals and families.