"She is a testament to how even the frailest can empower" - Lucy's CDH Story

2:26am on June 12th, 2018 became such an emotion filled moment for our family. Lucy Sofia Navarro came into the world to be welcomed by the unfamiliar hands of a neonatal crew rather than the arms of mom or dad. Normally, a parent anticipates the first cry of their newborn baby. This time, however, the special team waiting for Lucy Sofia to arrive was there to ensure that didn’t happen. One deep breath could mean air getting in to the intestines, in turn, causing them to dangerously expand in her chest cavity, where they pressed against her heart and lungs already.

Tiny Hero Lucy

A month earlier, a routine sonogram would show Lucy Sofia had a congenital diaphragmatic hernia (CDH for short)- an abbreviation that would have a lasting effect in our world. Having just found out a month prior that Lucy Sofia was already around 6-7 months developed without us knowing of the pregnancy, there was no time to process the information or feel the joy of welcoming a new family member.

With such short notice and little preparation time, the pregnancy went by fast with no less than two (and at one point, even up to 7) weekly doctor appointments and checkups. To say the pregnancy felt hectic is an understatement. Emotions ran high and interchangeably between excitement, confusion, stress, joy, fatigue, fear, anger, despair, helplessness; you name it.

Moreover, things were on the positive side. It was interesting to find out one of the first indications something was wrong was the excess of amniotic fluid around Sofia- something common in CDH cases. Based on some calculations, the size and effect of the hernia showed great probability that Lucy Sofia was on the better end of her condition. Her birthday would show us that calculations are one thing, and reality another.

CDH Survivor Lucy

At birth, while the neonatal team did their thing and the main doctor assured us that she was looking good, there was, however, what seemed a long period where the neonatal team was whispering things among its members. Several minutes later, we got the relieving news she was stabilized, but with little time for welcoming greetings and anticipated picture taking. She would have to be transferred quickly to the transport team from Children’s Hospital in Oakland. Mom wouldn’t get a chance to properly greet her there.

Meeting the transport team, we would find out that while Sofia was stable, it was taking a bit more to keep her that way.

The next two weeks would see Sofia on a prisoner diet..no milk in anticipation of an immediate surgery that kept getting postponed. Two towers totaling up to 13 drips and administered meds to keep her comfortable and sedated, IVs/PICC lines in each extremity, an EEG scan to make sure she wasn’t seizing while sedated, an inadvertent deflated lung and a couple of scares of needing the ECMO machine to ensure her well-being. Even then, such a drastic procedure didn’t guarantee she would survive.

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The morning of Sunday, June 17th 2018- Father’s Day- marked the biggest scare we would face with Sofia. The news came in she had taken a dive for the worse and wasn’t improving. ECMO was looking like the only path to take medically, but not one we were willing to accept spiritually. For such a small girl, the blood volume required to prime the machine would require a blood transfusion- something we could not accept scripturally.

Facing the tough decision of not accepting such a harsh and risky procedure with no guarantees, Children’s Hospital respected our wishes and prepped us to say our goodbyes while the staff worked diligently around the decision to try everything they had already but at the optimal (in most cases above known effective threshold) levels: maxed out oxygen, maxed out ventilator settings, bolus IV fluids to raise her blood volume, EPO to raise her red blood cell count and personal hopes and prayers. Miraculously, Sofia hung in there and taught all of us a lesson of WILL vs ODDS; of FAITH over THRESHOLDS. (She now has had to undergo two repair surgeries, as her hernia recurred in late November 2018. And as of writing this, is fighting a bout of RSV).

CDH Survivor Lucy

It wasn’t until we left the NICU that the nurses and doctors expressed how gravely sick Sofia was from the moment she arrived. Throughout her stay, we would hear she was stable and improving, and we always took that as a positive and a platform for hope and assurance. Perhaps, it was a good thing they were not specific in adding she was stable, but severely critical. With the exception of a couple of moments- one in which a doctor snapped at our ignorant positivity and another threatening to get a court order for the use of ECMO- the staff suppressing their view of the situation, allowed for our faith to grow and stay positive enough. In turn, as a couple of the charge nurses agreed, Lucy Sofia taught us some alternatives in treatments, and a huge lesson redefining the resiliency of such a small person and the power of will and faith.

Lucy Sofia may have had to wait 31 days after birth to be embraced by family and friends, but the truth is, she has captured the hearts of many from day 1. She is a testament to how even the frailest can empower; the tiny can have a huge impact.