By Jessica Schuster, MD
“The lows may feel lower, but the highs will be higher than you can imagine.” ― Madison Area Down Syndrome Society board member
This was our first piece of advice given after my husband and I learned our middle son, Jacob, would have Down syndrome or trisomy 21. These words started a completely unexpected, but wonderful, journey filled with a little something extra we had not realized we were missing. It has been a hard journey with some struggles, but through it I have learned to see people ― patients, colleagues and other people’s children ― in the way I want the world to see my son. I have been taught by my experiences that it is the length of one’s journey and perseverance, not solely the final accomplishment, that are worth celebrating.
The start of this journey collided with a career scenario all radiation oncologists can relate to: Oral Boards prep. After a seemingly lifetime of preparation, I fully expected I would be encountering the “scariest” event of my life to date in May 2016 ― Oral Boards. However, in December 2015, my husband and I sat watching our second son on prenatal anatomy ultrasound. During the ultrasound, the technician spent extra time on the baby’s heart. She explained, “I am going to have the doctor come talk to you.”
Anxiously, we braced for “bad news.” The obstetrician revealed a complete atrioventricular (AV) canal heart defect. As if answering a step 1 board question, AV canal defect triggered in my mind an association with Down syndrome. Despite a desperate desire to capture and understand every word from the obstetrician and genetic counselor, I found myself sitting in silence. Swirls of words danced around me. In 30 minutes, they covered an array of different trisomies, statistics about death in utero, life expectancies, specialist visits and the need to decide about abortion. After hearing the word “abortion,” nothing more was heard as my mind started racing with a million other thoughts and hypotheticals.
Amid relentless specialist visits and further testing, my husband and I questioned our career choices. As we received confirmation of Jacob’s Down syndrome diagnosis and need for heart surgery at three months of age, I began to struggle with picturing a future as mom of a child with special needs and as a radiation oncologist. Despite knowing we needed support and help, it was challenging to share with our families, friends and colleagues. Each retelling of our baby’s diagnosis and heart defect forced us to admit our fear, vulnerability and unpreparedness to be special needs parents.
My original plans included intensifying Oral Boards prep while on maternity leave. Most parents reading that comment, including myself, will probably laugh! Caring for a newborn is wonderful, but it leaves little room for anything else. In mid-April 2016, we celebrated Jacob’s birth. But minutes later, Jacob's NICU journey would start. Within the NICU, learning respiratory and feeding supports, Down syndrome and AV canal defects, I realized I had replaced radiation oncology board preparation with “real life board preparation” by learning how to be Jacob’s parent.,/p>
Jacob made slow progress, but his oral intake was not increasing. It became clear he would not be discharged home prior to Oral Boards. The morning after my final study session, my husband and I were informed Jacob could be discharged home with a gastrostomy tube. This was our first emotional high! We were overjoyed by the possibility of our baby boy coming home. However, gastrostomy tube placement would require transfer to another facility. Outside of a few nurses, my commitments as a radiation oncologist seemed irrelevant to Jacob’s care team. We informed the NICU team that we consented to the procedure if the transfer did not happen while I was out of town for Oral Boards. Being present with Jacob on his first night in the new NICU was extremely important to me.
The day before my planned 36-hour trip to Louisville, Kentucky, a NICU team member popped in to alert me that after “some extra work,” the transfer NICU had accepted Jacob for the next day. Stunned, I stared as she left the room completely unaware of what devastating news she had delivered. This was a low moment. I was overwhelmed with feelings of being unheard and unseen. I was confronted with the fact that my two worlds seemed destined to be incompatible.
The Oral Boards paled in importance to my desire to care for my child. After wrestling with the decision, I arrived at the testing location largely due to a supportive husband gently pushing me and a gracious mother who drove me. Contrasting the devastating low of missing Jacob’s first night in the new NICU, we were able to celebrate Jacob’s homecoming and my Oral Boards results on the same day.
My husband and I learned that happiness from accomplishment is fleeting as special needs parents. We felt a pressure to push the next milestone to help Jacob be closer to a typically developing child and prove we were “good” special needs parents. Initially, we ran ourselves and him ragged, attending every possible therapy (feeding, speech, occupational therapy, physical therapy) and specialist appointments. We read about and tried alternative therapies ― diets, supplements, etc. The fatigue and guilt from constantly apologizing either to my patients or clinic staff or Jacob’s providers was (and sometimes still is) intense. The balance between work and special needs parenting proved to be difficult.
Thankfully, during this time, my husband and I met other parents through several local support organizations who related their journeys as special needs parents while balancing career decisions. They shared an openness about success, failure and regrets. Although no one used the term “sponsor” or “mentor,” this is the role these families served for us. They modeled and shared their life as a special needs parent while staying at home, part-time, or full-time work.
I decided ultimately to remain in my career full-time. I share my story not to say one choice is better ― remaining in versus leaving the workforce, but to validate how intense and complex work-life balance decisions can be for individuals. I also share, because I was helped immensely through the openness and willingness of other parents in the Down syndrome community to share experiences.
Prior to exposure to the Down syndrome community, as a physician and parent I found self-worth in accomplishments and saw failure until the next task was completed. However, the other special needs parents I met seemed to have “a little something extra.” They had the ability to celebrate progress and accomplishment. This represents one of the true highs. Some of my highs go completely unnoticed to most in society as they are not “big” accomplishments. I celebrated with uncontrollable happy tears upon Jacob’s hospital discharge after heart surgery, when Jacob learned to walk with confidence (age 3) and when he said “Mama, love you” (age 4 ½). Jacob’s accomplishments were celebrated, but Jacob himself and his journey are potentially even more positively impactful. For example, my oldest son, James, read a book called “47 Strings'' to educate his second grade class about how people with Down syndrome have a little extra in their DNA causing some milestones achievements a little slower than others. Through loving Jacob, our oldest son is often able to recognize differences in others and respond to those differences with kindness and depth of understanding well beyond his age. By opting to remain in our careers, my husband and I have been able to provide seemingly small insights to our colleagues, such as having the family present for inpatient team rounds and improved understanding of need for work hours flexibility.
From Jacob's medical experiences, I became a better radiation oncologist. My experiences remind me that, as an oncologist, I often meet people at one of their most vulnerable life moments. I remember that this uncertainty and fear makes information harder to process. I strive to emulate medical professionals that cared for Jacob, and also served as navigators through the complexities of his care. Establishing intersectionality between the patients, their families and myself starts with learning about the patient as a person first. Patients should not be reduced to only a “cancer patient.”
The Down syndrome community highlights the importance of person-first language, meaning a person is a person first, i.e., Jacob has Down syndrome versus Down syndrome kid. So, I often start visits with social history asking, “What is your career and what do you do for fun?” Rapidly over a few minutes, “cancer patient” transforms into John, avid biker and primary caregiver for his elderly mother who now has the additional stressor of prostate cancer. Without acknowledgement of a patient’s life before cancer and guidance from medical professionals like us, patients are often unsure how to rank pre-cancer life obligations and cancer care. Through my experiences as Jacob’s mom, I have learned to appreciate the “true highs” of helping patients navigate their balance ― cancer versus life.
Although I cannot travel back in time and remove the anxiety, fear and uncertainty from my 2015 self, I can share the message that from the lows there are also highs higher than I could have imagined. These highs are not because I have accomplished more; in fact, some might argue I have achieved less. These highs stem from a blessing that has allowed for unexpected personal and professional growth. Jacob has given us the opportunity to see all people in the way I desire the world to see Jacob. He is more than just a “kid with Down syndrome,” as each of us are more than just a label.
While an individual’s accomplishments deserve celebration, I find myself often admiring and celebrating people more for their journey and perseverance than the actual accomplishment. We have so much more to celebrate over a lifetime. I have such excitement for the future where my patients and children continue to help me grow as a radiation oncologist, colleague, mom, wife and advocate for parents and individuals with Down syndrome. I share our story to empower others to recognize that their own story and journey has value and is worthy of celebration and to highlight that the seemingly simple act of sharing has the power to help others.
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