There is a tremendous amount of media attention surrounding the Baby Charlie case in the UK right now. I only know what is covered in the media regarding that particular case so I am far from an expert on the details. What I do know is that world leaders, especially those vying to slash funding to similar families in the United States should stop providing false hope and stay off Twitter! It is a terrible tragedy for any parent to have to face such a devastating condition affecting their child. What is even more tragic is that it is very common. People in hospitals across the world face the decision to end treatment deemed medically futile at every hour of every day. As pediatric nurse in two busy ICUs over my career, I have personally witnessed it more times than I can count. What is unique are the circumstances that surround each case. I have seen everything from child abuse to cancer to car accidents even rare diseases such as the horrific one affecting that little boy. No parent should ever have to deal with such horror. But I was not the nurse for the parent, I was the nurse for the child. While of course it’s true that in medicine you do care for the whole family, especially in pediatrics, your true advocacy responsibility lies with the patient.
For most healthcare team members it comes down to quality of life, as it should. What makes this person who they are? As one of my favorite pediatric ICU attending physicians says to parents “Are we doing things for your baby or to your baby?” Just because we have the medical advancements to do more does not always mean that we should. I wish more people understood is that there are things so much worse than death.
People always used to say to me, I don’t know how you took care of dying children. Many moments were awful. I cried in the bathroom/stockroom/lunch room an infinite number of times. Watching parent’s decide to withdraw care when it was deemed medically appropriate is the ultimate display of unconditional love. These parents knew their lives would forever be scarred by this day, but they chose to honor their baby’s life by ending their suffering even though it would lead to their own immeasurable pain. To bear witness, not only once but many times to such an incredible sacrifice is one of the greatest gifts I have ever received. Being in the presence of true selfless love like that is the closest thing to a miracle I have ever experienced. Every death I witnessed took something from me, but also gave me a strength of faith in return. To all the families that have touched my heart over the years thank you for loving your child enough to let them rest. I pray I never fully understand your pain, but if I ever have to I hope to be given your strength to honor my baby that way.