On March 25, 2020, Jess and Bart Rinke gave birth to a son, Darby. The pregnancy was completely normal, so they didn’t expect any health issues. Darby’s parents had high hopes for their little boy.
When Darby was born, his congenital abnormalities unfolded over the first couple of months of his life, and his diagnosis eventually included things like hypotonia, acid reflux, a laryngeal cleft, laryngomalacia, severe bronchomalacia, pulmonary hypertension, hypoxic respiratory failure, central apnea, severe encephalopathy, and seizures.
At first, the doctors just thought he was sleepy, and he had trouble breastfeeding due to his tiredness and trouble breathing. Darby’s parents resorted to bottle feeding and left the hospital with their newborn.
On his third day home, Darby choked and aspirated while feeding. Jess had to give her baby mouth-to-mouth because he was turning blue. The family ended up at the ER, where they inserted an NG tube to make feeding baby Darby easier. He aspirated again, so they moved the baby to Children’s Hospital in Detroit. He spent a week there, where they diagnosed him with infantile spasms. The doctors were also worried he suffered from sleep apnea. Nothing definitive was diagnosed.
The ENT specialists performed a myriad of tests, suspecting he had something wrong with the upper airway that prevented him from eating and breathing at the same time. All the while, Jess and Bart were taking turns staying awake for 4-hour shifts at a time to keep eyes on Darby at all times.
Doctors performed an upper airway surgery, which helped clear up the sleep apnea, but when they inserted a feeding tube into his stomach, they perforated his bowel, which caused sepsis. After surgery, they weren’t sure Darby would make it.
All of this occurred during COVID, so Jess stayed in the hospital with Darby while Bart was home until it looked like Darby wasn’t going to make it, so they finally allowed Bart into the hospital to see Darby and say his goodbyes.
Darby made it through that night, and was finally given a diagnosis of bronchomalacia, which is the weakening of the cartilage in the airway causing his airway to collapse multiple times each day. All this led to Darby being placed on a ventilator to help keep his lungs open so he could breathe. Now that Darby was on a ventilator in the hospital, he slowly started recovering day by day, getting stronger and stronger over the next three months until Darby was stable enough to come home from the hospital. The plan for Darby was to come home with his ventilator machine as well as a lot of other complex equipment and treatments to help keep him stable at home.
Jess and Bart partnered with their local private duty nursing, at home care provider, First Day Homecare to help when they brought Darby home. In most children on ventilators, the ventilator machine does all the work to keep the child breathing normally throughout the day. This wasn’t the case for Darby. Sometimes up to twenty times per day, his upper airway would collapse, and he would turn blue from not being able to breathe. He’d have to be taken off of his ventilator machine quickly so an Ambu Bag could be hooked to his tracheostomy tube, and his caregivers would stent open his upper airway by giving short, quick breaths from the Ambu Bag. Darby’s case was extreme, and he required around-the-clock care.
Jess had to return to work and trust a pediatric private duty nurse with her child. She understood that his needs were more than most medically fragile children. She interviewed Charity RN from First Day Homecare, and Jess said, “She was amazing.” Jess helped Charity learn Darby’s care for the first couple of days, showing her their routine.
Darby was First Day Homecare’s first-ever pediatric private-duty nursing patient, and Charity was his nurse. Charity Hemmingsen, now the Director of Clinical Services, was impressed with Jess’ calm demeanor and expertise in taking care of her son. In response, Jess would say, “This is just what we do.”
First Day Homecare allowed Jess and Bart to take a step back from being Darby’s caregivers and gave them back the opportunity to be his parents. Charity gave his parents the most precious gift of all, time with Darby while she took over the hard work they had been doing for Darby’s entire life. First Day Homecare made the transition much easier for the family. Jess says, “You can’t do it by yourself. You can’t keep up the four-hours-on, four-hours-off schedule.” She also mentioned how hard it is to allow someone to come into your home and trust them with your medically challenged child, but says that the First Day Homecare nurses quickly became a part of their family.
Two nurses were assigned to Darby’s care initially, and it provided the family with as much normalcy as possible. Charity says, “These parents are doing the hardest thing they have ever done, and we can step in and help by giving them just a moment to breathe.”
Darby lived comfortably at home for the next year, during which he had a mucus plug and almost died. Jess had to give him CPR on the way to the hospital. Going through that traumatic experience led Jess and Bart to the decision to bring in palliative care to ensure that if something bad was going to happen to Darby again, the family would be more prepared, and Darby would be comfortable.
At home with palliative care and First Day Homecare nurses providing shift-based care, Darby maintained his health for a bit longer until he eventually got to the point where he no longer tolerated his tube feedings, at all. The family scheduled hospice to come out, and they removed Darby from his ventilator. He passed on March 22, 2023, just before turning three years old.
During the last few weeks of Darby’s life, First Day Homecare continued to help with his medications and handle the medical aspects of his care so his parents could be with their son and make the most of the time they had left with him. Darby will always remain Jess and Bart’s angel that changed their lives forever. First Day Homecare is grateful to have been a part of Darby’s story and says he was a “very special first pediatric patient.” In collaboration with Darby’s parents, First Day Homecare founded the Darby Rinke & First Day Homecare Vent Program Support Fund, which is a non-profit fund established to help care for infants and children on ventilators. The fund also supports research efforts from the CS Mott Children’s Hospital Pediatric Ventilator Clinic, which was where Darby received much of his care. If you are interested in donating to this fund, go to https://giving.umich.edu/basket/fund/373515 .