Trust

The trust between a parent and their child’s medical provider is important.  That’s pretty obvious.  I am generally trusting of providers who listen to me, interact with Caleb, and present their recommendations with confidence.  Until I became a parent of a medically complex child, I did not realize just how deep this trust could be.  I was familiar with what I now consider basic trust -- for example, my doctor recommended that I continue to take my medication Humira throughout my pregnancy in order to keep my Crohn’s disease under control -- I trusted her and followed her guidance.  Trusting my infant’s speech therapist when she recommended to stop bottle feeding at 5 months of age required a deeper level of trust than I have ever had with my own healthcare providers.

The recommendation from our Aerodigestive team to stop offering Caleb bottles at 5 months of age was soul-crushingly devastating to me.  I had already given up my dream of exclusively breastfeeding him, my self-proclaimed goal before he was born.  Now not only could I not breastfeed him, but they also wanted me to stop bottle feeding him?!  Babies rely on breastfeeding and/or bottle feeding as their primary source of nutrition and hydration until 12 months of age.  After how hard we worked over the past 5 months trying to get him to take bottles, my brain could hardly fathom the idea of quitting now.  So much of an infant’s waking time is spent breastfeeding and/or drinking bottles, snuggled up with their parents and caregivers.  How could I let go of this?   It felt so wrong and unnatural.

I remember sitting in Caleb’s nursery talking on the phone with our amazing speech language pathologist/feeding therapist who told me that it’s not uncommon for infants around 5 months of age to become averse to the bottle after struggling with it since birth.  This is likely what we were seeing in Caleb.  She said that many of these babies end up enjoying self-feeding with purees and can learn to drink from puree baby food pouches and straw cups.  Most importantly, she validated my grief.  I didn’t have to explain why I was so devastated by the thought of not offering Caleb bottles anymore.  She understood.  She validated the fact that this was incredibly difficult to ask of a mother, and she put me at ease by telling me there was absolutely nothing wrong with offering Caleb a bottle at nighttime purely for my own comfort, and his, for as long as I wanted to.

These acts of true compassion and humanity elevate the trust in your relationship with a healthcare provider.  Feeling emotionally supported as a parent of a medically complex child is absolutely crucial to the success of any medical intervention or plan.   I wholeheartedly trust our speech therapist to an extent far greater than I have ever trusted one of my own healthcare providers.  This elevated level of trust was instrumental in Caleb’s successful feeding journey.

I continued to offer a nighttime bottle mostly for my own comfort until I felt ready to let it go.  Eventually we threw the bottles away and focused on straw cups, purees, and pouches.  Sure enough, after many months of messy practice, Caleb did ultimately take to self-feeding purees and even drinking from a straw cup much sooner than I ever would have imagined.  He remained fully dependent on his tube feeds until shortly before he turned 1 year old.  It took time, but ultimately I was able to see how much better his time and energy was spent practicing self-feeding purees rather than struggling to drink a bottle.

As healthcare providers, we often build emotional walls between ourselves and our patients.  Sometimes, this is necessary to protect our own mental heath and preserve our ability to be excellent providers.  The provider who can take down that wall and sit with the parent on the other side is undoubtedly going to elevate the trust in their relationship.  This level of trust is crucial to providing optimal pediatric patient care.

Thank you for sitting with me on my side of the wall, N.