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Resource

Advance Care Decisions for My Infant Meant Getting Clear on What Really Matters Most

Pediatric Healthcare Decisions
By Erin Epstein, Specialist

A mother’s worst nightmare

On April 4th of 2019, my infant daughter was diagnosed with Severe Pulmonary Hypertension and transferred to a level IV Newborn/Infant Intensive Care Unit (N/IICU). My daughter was also diagnosed with Myeloproliferative Disorder which is a disease of the bone marrow and blood. In some cases, it is a precursor to childhood Acute Myeloid Leukemia.

Once at the hospital, things happen very quickly. Not only were we having to make decisions about our daughter’s lungs and the course of treatment, but now we were also having to make a decision whether or not to have our 2-month-old undergo chemotherapy. This is not a decision that any new parent ever thinks they are ever going to have to make.

At this point in time, I had been a Specialist at Vital Decisions for 3 years. I had spoken with hundreds of families about Advance Care Planning, the medical preferences they’d have for themselves or family members in adverse health situations. I had spent years thinking through what it means for someone to have a positive quality of life. Years speaking with people about what treatment options were in line with their goals and how they wanted to live out the rest of their lives. I never imagined that I’d have to make such life-changing decisions for my infant.

Balancing a mother’s heart with an Advance Care Planning Specialist’s mind

We spent approximately three weeks in the hospital with our daughter. Three weeks that felt like three years. Because of my knowledge of Advance Care Planning, I did not understand why the Doctors’ were not prompting these conversations. I quickly learned that these would be conversations that I would have to initiate on my own. I began to wear two hats, the Vital Decisions Specialist in Advance Care Planning and the mother who wanted to do everything to save her child but also ensure the best quality of life for her.

I spent this time tapping into what it really meant when thinking about quality of life for a child. What were the trade-offs here? If we were to consent to certain forms of treatment, what would be the long-term effects? What was too little and what was too much? Our daughter very briefly turned the corner and we had a few days of hope. Each day I would pull doctors and nurses aside and make sure that I was informed on exactly what was happening for her each day.

I’ll be the first to tell you how hard it can be to get a minute of the doctor’s time in a hospital where infants are coming in and out of crisis. Doctors don’t always have the time to sit with you and make sure everything is understood, which means the onus of information gathering is often on the patient or the family. I felt the need to be informed in order to make the best decisions for my child and have an understanding of what we were facing could mean for her quality of life.

I really needed to take everything that I had learned throughout the years as a Specialist and apply it to the situation that I was facing.

The ultimate heathcare decisions

The week of April 20th things took a turn for the worse. My daughter was not responding to the breathing treatments meant to improve her lung functioning. Her lungs kept collapsing.

I made a decision that for me, an acceptable quality of life for her would be that she could live happily and know who her family was. With the amount of support that our daughter needed to breathe, and no progress, this possibility was fading further and further away.

My non-negotiable, which I had to think about, was that I did not want her heart to stop without being able to hold her. The evening of April 24th, our daughter was on the verge of going into heart failure.

With everything that I had ever learned and with the guidance of all the Advance Care Planning conversations I had ever had, I made the decision to hold my daughter and allow her to pass peacefully in my arms surrounded by her family. This was the hardest decision that I have EVER had to make, but I am certain that my time spent working in the field of Advance Care Planning allowed me the opportunity to choose how we would spent the remaining time with our child. For that I will be eternally grateful.

I spoke with one of my daughters doctor’s months after she had passed and the doctor said to me “without your ability to make decisions, things would not have been as peaceful for your daughter.”

Now more than ever, I know why this work is so powerful.