Several months after Oakes died, I was talking to my friend Dr. Caroline Lee and she asked me to write a letter to incoming fellows at SLCH to give them advise on what they need to know about beginning their fellowships in the Heart Center. She explained to me that she had asked several of her collages at the hospital to also write these letters. She was going to be giving a presentation to the incoming fellows and was compiling advise to share with them. When she told me which other doctors would be contributing I was absolutely intimidated, but I felt very confident that I could write from my heart and offer a very special perspective.
I thought about this letter for a couple of weeks and then when I sat down to write it, it just poured out of me. I wanted to share this because, well, it comes from my heart, it speaks to where my head was two months after Oakes passed and where it still is. The overall message is still powerful to me. My goal during most of Oakes' life was to live with him, to carry on with my family the best I could, and today in the midst of this yucky grief, I am still striving for the same goal.
Dr. Lee shared with me that she read my letter last as her closing words to the fellows. My letter was later published in the SLCH newsletter for staff and employees to read. I hope it inspired at least one student, and impacts at least one family. I hope it will inspire you too.
Advise from Oakes' Mom:
I am a Mom. A worried, scared, emotional, overwhelmed Mom. Not only is this unit foreign to me, it is THE scariest place I have ever been. Please meet my son. He is not just a chart. He is the little bundle of cuteness in this hospital crib. He is my life, my heart, and my love. Please come in and look at him, and (after you foam in) please feel free to touch him. He is not just numbers on a monitor. He is my baby. If you are up for it, please smile at him and me. If I ramble on and on to you and ask you impossible questions that you don't have answers for, so just tell me that. It is refreshing to know that not everyone in the unit knows everything! After we talk about my son it's OK to linger a minute and ask me how I am doing today or offer some nicety. More than likely I am freaking out, full of anxiety, a hot mess and stressed in a way that I didn't know was possible. Being friendly towards me is welcomed. I may not be a brilliant doctor, but I might be an expert on my kid, so please listen to me when I feel the need to chime in. Ask me questions and ask me for my opinion too.
I imagine that one comes into this profession to not just 'help people' but to help some of the smallest and most vulnerable people. For this, I admire you. I admire your interest in and dedication to these sick little people, but I challenge you to help more than the patient that has been admitted. As a Mom that has spent nearly fifteen consecutive months in the Cardiac Intensive Care Unit at St. Louis Children’s Hospital, I am pleading with you to help give admitted families a better life while they are here. This may be by extending the life of each patient, but I have to stress that increasing the quality of each day spent in the unit is what will comfort parents and patients maybe as much or more than the news of good test results. While I was here I understood that my baby was very sick and his heart had complex defects, and I respected that moving him too much or providing too much stimulation wasn't always in his best interest. However, very often, quality time with Oakes was great medicine for my little man and myself. Be assured when I looked into my son's crib I saw perfection, he was my sweet, little baby. My goal was always to get him home, and as soon as possible. But while we waited to get him there, we wanted to continue to LIVE within the unit. I wanted to hold him as much as possible, I wanted to snuggle with him and I wanted to nurse him. I want to do normal things with him – dress him, bathe him, read books to him and see him interact with his sister and Papa. I wanted him to hit milestones no matter how delayed, and I wanted to make as many positive memories with him as I possibly could. Life can be very short in the Cardiac Intensive Care Unit, so please help families live the best lives that they can. This may be as simple as sharing a smile or being friendly, showing interest or concern in a family, suggesting they leave the hospital for a little bit to take a break or to go home to sleep for the night. It may be advocating for normal family interactions or special activities, or it may be simply reaching out to a social workers, therapists, or child life specialists when you can sense a need from a family.
I am Oakes’ Mom. I have been worried, scared, emotional and overwhelmed. After those fifteen months Oakes left the Cardiac Intensive Care Unit, he left this life and moved on. His passing was not that long ago, but already the memories that are the strongest are not loud memories of who delivered bad news in a good way, or how an emergency was handled, what numbers the monitors displayed or other medical details. What stands out far beyond anything else and what I was able to bring home with me are amazing quiet memories of normal moments – wearing a onsie, sitting up, eating applesauce, falling asleep in my arms, smiles at a big sister, flirtations with a special nurse, cooing at a grandma. I am so thankful that we were given moments that bonded us to Oakes, moments that made our lives feel normal and moments that reminded us that Oakes was normal too. He wasn’t just Oakes, the sick baby in room nine. He was our son – sweet, happy, perfect, Mighty Oakes.
I am thankful for those moments and I am thankful for the amazing staff that helped to make those moments happen.
LIke I mentioned, I admire you and I pretty much love you for the work that you are about to begin helping children and their families. May you all be mighty.