Drawing inspiration from her role as a mother to five remarkable children, a loving wife, and a cherished friend, Rose Will-Dowling stands as a proud Advocate for The Unforgotten Families. We had the privilege of sitting down with Rose to learn more about her day-to-day life and the heartwarming journey that led to the creation of her beautiful family. As you journey through our blog, you’ll discover more about Rose, her resilient, medically complex family, and ways to stay connected to their story.
“Our entire medical journey started when my now five-year-old son (Waylon) continued getting sick with croup,” said Rose. “After a diagnosis of congenital subglottic stenosis, we chose to do an airway reconstructive surgery at six months of age. Unfortunately, with his procedure, they needed to insert a trach.”
Rose and her family were told that Waylon’s trach would be taken out in two weeks, but reality unfolded differently, with the trach staying in place until he was nine months of age. Waylon spent eight weeks in in-patient care recovering.
Not long after, during the COVID-19 pandemic, Rose found herself embracing the surprise of pregnancy with twin boys.
“After Waylon’s journey, my husband and I decided that we were done having kids. But who couldn’t love two more beautiful surprises?”
The revelation of carrying twins prompted Rose and her husband to opt for genetic testing while the twins were still in the womb.
“All we cared about was two healthy, happy babies,” Rose emphasized.
Shortly after the twins entered the world, a pivotal moment transpired as one of the twin boys, Wylliam, was swiftly transported to the NICU due to anomalous breathing patterns and airway indications.
Two weeks after the twins (Wylliam and Wesley) and Rose arrived home from the hospital, she sensed something was wrong.
Characterizing it as mom intuition, Rose recognized the onset of bronchitis in the twins, promptly leading to their hospitalization. Continuing with her gut feeling, Rose reached out to the surgeon who performed Waylon’s airway surgery, hoping to garner additional medical attention, insight, and support.
The surgeon’s guidance hinted at a triad of potential diagnoses, and upon hearing this, Rose’s conviction grew that one of the twins (Wylliam) shared the same diagnosis that had affected Waylon: congenital subglottic stenosis.
Two weeks later, on January 27th, Wylliam was admitted to the operating room, needing surgery to repair his respiratory complexities.
“I remember thinking how much I can’t believe I’m back here again,” said Rose. “I felt like I was in a nightmare that all of this was happening again with one of our beautiful new baby boys.”
Wylliam required a tracheostomy if the family wanted him to have the best chance at life. However, if the family had to do a trach, she and Rose’s husband wanted to do something else.
After staying up all night and doing research, Rose and her husband decided to sign off on a cricoid split, allowing Wylliam’s intubation to go from a 1.0 to a 3.0.
“My husband and I thought Wylliam would have the same path as Waylon, but their stories are two completely different chapters of the same book.”
Mid-interview, Rose had to excuse herself to assist Wylliam as his vent had been going off, requiring her to check on him during his nap. This moment was a clear example of how 24/7 care for these kiddos is and what life looks like for a medically complex family, not just Rose’s.
“Without the incredible help of our amazing home nurses, I am not sure how we would do it,” said Rose. “Our nurses are family!”
Rose is a stay-at-home mother, caring for all five kiddos – day in and day out.
Her day-to-day includes getting the older three children sent off to school, taking care of Wesley and assisting Wylliam in his massage therapy, speech therapy, music therapy, and child-life therapy classes when they arise.
Even after all the medical intervention, appointments, visits, and medication, Waylon, Wylliam, and their siblings are normal and happy kiddos. They love to be goofy, play baseball, run around outside, and spend time with one another! Rose mentioned during this interview that these additional medical complexities don’t stop them from living life to its fullest! They love to travel and still eat out several times a week.
Since Wylliam and Waylon’s diagnosis, their older sister, Brinley, has also been diagnosed with tracheomalacia.
“As hard as things get, staying positive seems impossible sometimes, but at the end of the day, it will get better. There is light at the end of the tunnel – I promise.”
A heartfelt expression of gratitude extends to Rose for entrusting us with her medically complex family’s extraordinary journey. For those eager to delve further into their story or connect with Rose in her role as a dedicated medical momma, a warm invitation is extended to follow her on Instagram: @rosewilldowling.