As I was scrolling through my Facebook feed one morning, I noticed an article with a title starting with: “When Doctors are Wrong” with a picture of a newborn baby with a breathing tube in the NICU. I immediately opened the article and started reading it with interest because my baby also looked this way, so tiny, in the NICU, with lots of tubes all covering her little body. As I started reading, the story started so similarly to my story. A newborn baby had low body temperature, not waking up to eat, not nursing. When a mom brought the baby to the pediatrician’s office, they were told to go to the hospital by ambulance, and the doctor called 911. The baby was found to have extensive damage to his heart and brain. The family was told the baby likely wouldn’t be coming back home. And here’s where the story turns a drastically different turn from our story and becomes more similar to many stories we heard over our month in the hospital with our daughter. Doctors were wrong. The baby not only survived, but everything that was thought to be brain damage has miraculously disappeared. Baby went back home and is OK. And so the mom is writing her story to inspire others — about courage, about faith. She even took it a step further and said that while she realizes many people in her situation have a different ending of the story, she believes that God gives everyone an ending that’s best for them. I’m not including the link to the story in this post because this is a story that we’ve heard and read too many times. It always goes along the same lines. Something was very wrong with a pregnancy or baby. Doctors gave a very grim prognosis. Yet, everything is just fine. Doctors were wrong. They don’t know. The outcome is not up to doctors; it is up to God. In some ways, I can indeed understand and relate to such comments. I also have learned from my experience that medical knowledge is indeed limited, and doctors are human beings just like the rest of us, except with more medical knowledge and more information. Yet, they’re still people and can be wrong and can make mistakes just like anyone else. I have learned that if any medical situation arises, no matter how minor, I have to think for myself and understand everything, and not fully rely on any doctor, no matter how experienced. In fact, I can say that I started to pray and rely on God more. I pray for my kids, and I pray that my family never knows another tragedy, and for this, I can only turn to God for help. I also recognize that it is very important to be thankful for one’s blessings in life, and I understand anyone’s desire to be extremely grateful and share their miracle story. I also have been grateful and very aware of the many blessings and much happiness and joy that my family still has, despite our devastating loss. But, where I see a problem is where the story usually ends with a lesson for all of us — everything happens for a reason, everyone gets what’s best for them regardless of the outcome. Interestingly, they’re usually written by someone who had a miraculous outcome, not those who had a devastating tragedy. After my daughter died, I too tried to have faith and believe that there’s a purpose to what happened, there’s a reason for why I’m on this journey. I have done many projects and activities in her memory in order to help others and to find this purpose for myself. Many of those activities turned out to be very rewarding, and I hope that my efforts will have an impact and bring positive things into the world in her memory. In Judaism, there’s a concept of hashgacha pratit (divine providence), which means that God is involved in every detail of our lives, and I have seen God’s hand in some of the events that happened and some opportunities that came my way. Finally, I try to have faith that my story and my family’s story is much bigger than this devastating loss. I try to live every day according to this belief. Still, it takes a much different level of courage and faith to keep going when my story did not end in a miracle but ended in a tragedy. And while I’m sincerely happy for the author of the article I’ve read and for all others who told us their own miracle story, I believe it’s a little presumptuous of them to use their experience — while still having their baby in their arms — as a lesson in faith for others, like me, who only have a heartbreaking box of “memories” to show for my baby. Yes, sometimes when giving a devastating prognosis, doctors are wrong. But — many times, most of the time, doctors are right. This might be difficult to accept and even more difficult to turn into a nicely packaged inspirational story with a sweet beginning, a dramatic plotline, and an odds-defying ending, but it is still important to share, and I hope can still be inspiring. Sophia Zilber is a patient advocate. Source
