Sharing Owen's Story

Pete and I had the opportunity to speak at a Grand Rounds forum at Tufts Medical Center in Boston yesterday afternoon.  I thought I would share my piece of the presentation.  The subject of the discussion was palliative care.  It was eye opening to see many physicians view palliative care nearly the same as hospice care.  Pete also spoke at a palliative care conference a week before Owen passed away last October.  We no longer have Owen in our arms care for, but we are still able to spread the word about our sweet mystery.  It felt good to talk about Owen and see some wonderfully familiar faces in the doctors that cared for our little guy.

Owen joined our family just sixteen short months after his big sister arrived.  Pete and I were firmly entrenched in babyhood and the plan was to lump the sleepless nights together with smooth sailing ahead after clearing the toddler years.  Owen’s pregnancy and birth were uneventful and on target – exactly what every parent and OBGyn could hope for.  Pete and I were actually nudging ourselves on our way out of the hospital because Owen was doing exactly what little babies should do: eat and then sleep.  I frequently describe his big sister, Ellie, as being born with her running shoes on. She is a girl on the go and has been from her first day.  Finally we got our ‘easy’ baby.

‘Easy’ lasted for exactly four days.  On day four, Owen started to cry.  He didn’t latch for nursing, he screamed when we tried to bottle feed him, he didn’t want to be shushed, rocked, or bounced.  All he did want to do was scream.  Day and night.   The next two months brought numerous trips to our pediatrician’s office.  We eventually settled on the labels dairy intolerance, reflux, and colic.  None of these words stopped Owen’s endless crying, but it gave us hope we would get our sweet guy back once he outgrew these complications.

At Owen’s two-month well-baby check up, his head measured a bit small.  Given his history, we were referred to the Neurology Department at Tufts Floating Hospital for Children- just as a precaution.  I will never forget our nurse practitioner trying to comfort me with the words,” This is just to be thorough, let them laugh you out of the neurology office.”  But I knew.  I already knew there was something bigger going on with Owen. 

My memory of our visit to Neurology is: Pete and I spent 10 minutes with Dr. Tauri describing Owen’s behaviors.  It seemed like a really short appointment, which in hindsight was foreshadowing of how sick our little boy was.  Dr. Tauri knew immediately that he wasn’t looking at a baby with a dairy allergy and reflux.  We were admitted to the hospital from that appointment and had two days of tests and consults with physicians to figure out what was happening to Owen. 

The diagnosis never came, but the prognosis held true.  What was initially believed to be Krabbe Leukodystrophy was not confirmed, but the portion where we were told Owen had a life limiting disease was correct.  Owen passed away in October 2013 after two years and two months with our family.  At the end of our initial hospital stay, we were introduced to Dr. Fauman, who would work with us to make decisions based on comfort for Owen.

Palliative care- a term that Pete and I were initially blissfully ignorant of its meaning.  Yet, it became a point of reference for us in the journey we were on with Owen.  Pete and I quickly made the united decision that our goal for Owen was going to be comfort and quality of life over quantity of life.  We wanted him home with us.  We wanted him free of tubes and wires. We wanted him to be as comfortable as we could make him.  We wanted time to build some memories for our family.

We embraced this lifestyle with Owen fully.  We stopped worrying about calories, milestones, and schedules.  We started focusing on what worked to keep Owen calm.  In the months following Owen’s hospital stay, we tried many different combinations of medications.  Eventually we stumbled on Methadone.   There was a scientific reason behind this drug choice, but it didn’t matter to Pete and me.  Only parents who are 100% focused on providing comfort to their child would allow their 4-month-old son to be placed on Methadone.  And it worked.

By embracing palliative care, we were able to make decisions for our son that provided him with quality of life.  Owen’s crying stopped, he started to smile, we could tickle his belly and he would laugh.  It was amazing.  Ellie got to know her little brother.  He had a personality and he became a member of our family.  Pete and I were able to bond with our son.  When you have an infant who cries endlessly, cannot be comforted, and doesn’t sleep, it is difficult to bond.  We loved him and we felt sorry for him, but in those first few months, Pete and I operated in survival mode.  Methadone leveled Owen out and allowed us to meet our little boy for the first time. 

Our journey with Owen never got easy.  He didn’t sleep well. Owen had a severe seizure disorder that was never controlled successfully by medication.  His neuro-irritablity was intense.  Owen had low muscle tone, he had cortical vision impairment, and high tensor tone.  Holding on to him or placing him in specialized seating required teams of therapists to figure out.  Owen was a glass half empty kind of guy, but he was adorable.  Curly red hair, bright blue eyes, and a set of dimples.   Easily the crabbiest kid of the block, but everyone who met him fell in love. 

We kept our goals for Owen in place as much as we could.  He vacationed with us for three summer’s at the beach in Maine, he went to Santa’s Village, he tried bouncy houses, spent Halloween in Oklahoma trick or treating with friends, and a vegetable never crossed his lips.  Only cake frosting and melted ice cream for my guy.  An exclusive diet of Elecare formula leaves something to be desired.

Our goal of quality over quantity in Owen’s life set us free.  We maximized every experience we could.  We focused to reaching the senses we could with Owen.  His seizures eventually stole his smile from us and he was non-verbal, but he would let us know when he liked something.  Owen would relax into Pete and my arms in a way that let us know he knew exactly who was holding and loving him.  He had a way of interacting with his sister that let us know he understood shenanigans were required when it was just the two of them. 

Pete and I are here today because we have lived the life of a terminally ill child.  We have made tremendously difficult decisions about our son’s life, but we never had to do it alone.  We had an amazing team of doctors at this hospital that provided us with every option, but allowed us to make the decisions we felt were correct for Owen. 

Dr. Fauman wore many hats with our family: physician, problem solver, counselor, and friend. She was able to relate to where Pete and I were mentally and emotionally because she has experienced the anticipatory grief parents go through as they love and care for child who is dying.  She loves the analogy of the forest and the trees and it is such a fitting use of words when discussing palliative care.  As a parent entrenched in the day- to day care of your sick child, it is sometimes difficult to keep your perspective on the overall goals you have chosen.  Part of Dr. Fauman’s job, the job of any doctor assisting with palliative care decisions, is to help parents and patients understand the big picture.

In October 2013, Owen was failing.  He was endlessly sick; he was sleeping most of the day and night.  He was very thin and struggling to breathe.  Owen was now receiving his medications through a g-tube and also receiving extra nutrition through a pump over night.  We were still bottle-feeding him as much as possible.  This was part of our goals of care for Owen.  We understood his severe aspiration risk, but we enjoyed the time feeding him and he enjoyed his bottles.  It was about the quality of the experience not calories.   One night I mentioned to Karen that Owen hadn’t taken a bottle by mouth from us in over a week.  We were feeding him through his pump at night to get food into him.  It was Karen, our palliative care doctor, who provided Pete and I with our forest moment.  We were so focused on one little tree, feeding Owen, that we missed the big picture.  Owen was trying to let us know he was dying, but we were missing the message. 

We stopped the overnight feeds and waited for Owen to wake up and demand a bottle.  He never did and a week later he passed away in our home surrounded by the family who loved him in the comfy bed we had purchased specifically for him.  Comfort over quantity, home over hospital, living a true life over an artificial one of tubes, wires and pumps.  We were tremendously blessed to be empowered to make these decisions for Owen.