Fairfax Neonatal Associates partners with the March of Dimes to coordinate the Family Support Program in the Neonatal Intensive Care Units (NICU) at Inova Children’s Hospital, Inova Fair Oaks Hospital, and Inova Loudoun Hospital. For parents, the time in the NICU may feel like a roller coaster ride of unknowns. By offering compassionate help, guidance, and education, the NICU Family Support Program is designed by previous NICU parents to help families navigate the highs and lows while their babies are in the NICU.
Below you can read the touching story of AJ Murray whose mom is now a NICU Family Support Program Coordinator at Inova Children’s Hospital.
I have told the story of AJ’s NICU journey, and beyond, a million times over, but to put pen to paper seems much more difficult. The written word challenges me to tame the storylines, the sidebars, the plot twists, and the seemingly unending list of characters who enter and exit. However, to attempt to reign in the story of my son’s survival, of our family’s survival, would be a disservice to this amazing, most unlikely tale certain to steal your breath, certain to make you believe in miracles all around us.
On our knees
There are moments in life when we are filled with anxiety as we brace for events which seem certain to cut us to the core. And then there are ordinary Monday afternoons, golden with an early setting sun, when we realize everything can change in an instant. The moments that bring you to your knees, come without warning.
After mild contractions at 34 weeks of pregnancy and two weeks of modified bedrest at home, my husband, Chad, our then 3-year-old son, Colin, and I piled in the car and set off to get a sonogram. My doctor was hoping we would agree to induce early, convinced the baby was large and it would make for a safer delivery. Everyone’s excitement to see the baby on the monitor was quickly quelled by the blank expression on the technician’s face. Before my husband could ask if anything was wrong, the technician announced she needed to get the doctor.
I tried to concentrate on the face of the doctor as he spoke to us, but my racing heart and pounding head made it difficult to focus. Wait, what? The heart is in the wrong place? How can that be? The baby has always had a strong heart rate. Why can’t he see the kidney? They said all looked good at the 24-week sonogram. Did he just say there is a mass? Does he mean cancer? Is that possible? What does he mean he is not sure what will happen from here?
Within days, my husband and I saw additional specialists and I was scheduled for a fetal MRI at Children’s National Medical Center. We hoped with more information, the doctors might be able to provide us with a more detailed overview with a more positive spin. While the MRI did provide better information, it drew an even bleaker picture.
The radiologist showed us that our baby was burdened by one long, vascular tumor which broke through the skin on his left shoulder and continued to wind itself through the chest cavity, displacing the heart, stifling lung development, and invaded the spinal column in the last three vertebrae. She explained she could not tell us whether the mass was malignant, a biopsy after birth would be needed. Children’s coordinated delivery of our child at Washington Hospital Center where the NICU transport team from Children’s could be present. We were escorted across the street to meet the ob/gyn that would deliver our child four days from then. We were prepared for the possibility of a still birth. My husband and I were is complete shock. We cried in pain together in a way I had never done before, or since. How could our child’s life be over before it had a chance to begin?
Canoe in the ocean
On October 22, 2007, Anthony Joseph Murray was born. Intubated in the delivery room and rushed over to the NICU at Children’s National, AJ embarked on his journey to recovery. When the biopsy results returned, AJ was diagnosed with Generalized Infantile Myofibromitosis. A benign tumor, this specific, generalized variant, with extreme visceral involvement, has a 99% mortality rate. As this information was shared with my husband and I, we looked at one another knowing that our shared fear was becoming reality: what if there is nothing to do? What if we have to let our son go, when he only just arrived? During our first family meeting, the NICU explained that due to the gross morbidity and mortality associated with this tumor, we had the option to rescind care. An oncologist also participating in our family meeting reiterated that there was little study and research available for this tumor; however, there were a few isolated cases of recovery through chemotherapy. She offered a plan to battle the tumor with chemotherapy while the NICU managed his daily care. I have repeated her words in my heart every day since for the last eight years, “It will be like taking a canoe into the ocean. I can’t promise you anything, but if you want to get in that boat, I will get in it with you.” At 10 days of life, AJ started chemotherapy.
We spent most of AJ’s first year of life in the NICU. We managed the roller coaster everyone speaks of. When AJ took two steps forward, they were often accompanied by three steps back. Our sweet baby endured chemotherapy, ventiliation, feeding tubes, sedation, daily x-rays, constant scans, heel pricks, methadone, surgeries, infections, blood clots; this list is endless. But somewhere between codes, in the midst of the cacophony of the NICU, we were introduced to the March of Dimes Family Support Program. This program provided a lifeline for our family as we tried to adapt our life to the needs of our medically fragile child. We learned new parenting skills. We learned how access the care team in way that we could better educate ourselves about our son and in turn be better able to advocate for him. We learned how to support our older son, frightened because baby brother still was not home, and Mommy and Daddy were rarely home together anymore. Most important, the March of Dimes taught us that we were not alone.
Just shy of his first birthday, we welcomed AJ home with a trach, a ventilator, g-tube and daily skilled nursing care. There were many new challenges and realities to adapt to, but being home was also amazing. Joy was hard won at times in our house, bu
t when your smiling child beams all the tubes and wires fall away and you are left feeling the love that glues your family together.
Breathe and Believe
Life after the NICU did not slow down. We learned through unrelenting trial and error how to maintain a mini ICU in our living room, how to finance it through private insurance and Medicaid, how to manage constant PICU admissions, how to maintain a calendar filled with multiple doctor appointments and therapy sessions of every kind: feeding, speech, physical and occupational. Our son, who was given little chance of survival, slowly learned to walk, to speak, to eat and to breathe. As the years past, our fragile son grew stronger and piece by piece his medical technology fell away. When AJ was six years old he was decanulated, and his life with a trach was no more. AJ named the top three things he wanted to do now that he did not have a trach: He wanted a dog, he wanted to swim in a pool and he was excited to go to the beach.
Today our family enjoys vacations at the beach, lazy summer days at the pool and we point fingers at who needs to walk our dog next. My husband and I have committed ourselves to reaching out to other NICU families to offer our support and share our experience. My volunteer work with the March of Dimes Family Support Program at Children’s National Medical Center inspired me to switch careers and dedicate my professional life to paying forward the amazing support I received as a NICU mom by supporting the NICU parents in my community in my current role as a NICU Family Support Program Coordinator at Inova Children’s Hospital at the Fairfax Medical Campus.
If you want to help other families find their voice and own their NICU story, please consider making a donation to the March of Dimes today. The NICU Family Support Program educates families to advocate for their babies and prepare to be competent and confident at discharge. Together we can help more families breathe and believe.