From the start of Tate Lambert’s life and through all the complications he endured for the next several months, it was always the goal of Elizabeth and Greg Lambert to have their newborn son home by Christmas of 2023. 

Tate and his twin brother, Oliver, were born at 33 weeks premature on June 9, 2023 at the Chester County Hospital, and after the brothers’ six-week stay in the neonatal intensive care unit (NICU), Oliver came home with his parents to their West Grove home. Tate, however, remained, and was eventually transferred to the Children’s Hospital of Philadelphia (CHOP) as a result of the complications he had contracted during his birth, which included premature apnea and difficulty in breathing on his own.  

In September of 2023, after several rounds of testing at CHOP’s neurology, pulmonary and genetic departments, Elizabeth and Greg were informed of their three-month old son’s condition: Tate was diagnosed with  PURA syndrome, a very rare genetic disorder that affects the nervous system, causes moderate to severe developmental delays and learning disabilities and often leads to movement difficulties, epileptic seizures and other health issues. To complicate matters, Tate would require the use of a trachea, a feeding tube and around-the-clock care that would involve monitoring his heart rate and oxygen levels and constant cleaning of his trachea and feeding tubes. 

“When you have twins, you have a vision of normalcy that imagines them spending their whole infancy together,” Elizabeth told the Chester County Press in early December of 2023. “It’s been hard, but we’re just pushing through to get them both home. Even though it’s tough, it’s about having the mental strength for it, and we both have that. It comes from knowing eventually that Tate is going to come home.” 

The unbearable agony of not having their son with them was compounded by their daily visits from West Grove to Philadelphia, a round trip that totaled nearly 90 miles and swallowed up three hours. Each car ride was filled with a rewind of questions, of doubts (Would he ever be able to talk? To walk?) and the small victories of a small smile from the bed looking up at them. It was then – when their infant son was 90 minutes away when Elizabeth and Greg shut their eyes at night – that their true resolve to bringing Tate home before Christmas began.  

Elizabeth and Greg redesigned their home to what would become the new normal; Tate’s room would occupy much of what had been the living room. They took training classes with CHOP officials on learning how to administer and care for trachea care and properly monitor respiratory devices. 

Connecting the dots to home care 

In order to bring Tate home, however, there was a necessary caveat: CHOP required that 80 percent of Tate’s home care would need to be performed by skilled, in-home nurses.  

Finding the in-home care specialists would take the Lamberts the next two months, and although they sought assistance with BAYADA Home Health Care in Downingtown to find qualified applicants, they were not finding the right persons who would provide in-home nursing care at a rate that is less than what they would earn at a hospital.  

“When Tate was in NICU at the Chester County Hospital for the first six weeks, I got to be friends with Victoria DiBernardo, a NICU nurse,” Elizabeth said. “After Tate was transferred to CHOP, Victoria would call me every week and say, ‘It’s my Friday check in. What’s going on with Tate?’ I would then provide her with all the updates, and especially where we stood on finding a nurse who could provide in-home care.” 

Sensing the Lambert’s frustration, DiBernardo spoke with her colleague Sue Paris, a pediatric nurse at the Chester County Hospital’s NICU unit, about the possibility of becoming a home care nurse for Tate. DiBernardo knew that Paris, who has 25 years of nursing experience, was familiar with tracheostomy tube cleaning and application, and that Paris lives with her family in Lincoln University, about a ten-minute drive from the Lambert’s West Grove home. 

The initial meeting between Paris and the Lamberts felt as if they had known each other for years, and in timing with Tate coming home from CHOP two weeks before Christmas in 2023, the Lambert family would now have a home care nurse for their son. 

“When I first started working with Tate, I was also working full time at the hospital so I could only give the Lamberts one day a week,” said Paris, who is the mother of two sons. “I never saw myself as a home care nurse, but I really enjoy working with the Lamberts and Tate is a great baby. He’s progressed to the point where I have dropped my status at the hospital to part-time, so now I’m able to consistently provide two to three days a week of home care for him.” 

To compliment Paris, the Lamberts now have several home nurses to provide for Tate’s care. 

“Sue fills in a lot of the blank spots that Greg and I have in our daily lives,” Elizabeth said. “If she works from 3 p.m. until 11 p.m. and hears that we aren’t able to find an overnight nurse, she will stay so that Greg and I can get some sleep.” 

Small steps, forward steps 

When Tate first came home, he was dependent on the ventilator, and while he no longer requires it, he is still reliant on the tracheostomy tube. Over the last few months, he has made incredible strides in his motor ability, such as being able to sit up independently. He also receives speech and occupational therapy and is often taken by his family to outings at neighboring parks and other outdoor activities.  

The Lamberts are hoping that Tate will be qualified to have his tracheostomy tube completely removed in June – near the time of his second birthday and in time for a planned family vacation at the end of July. 

“When Tate came home at six months old, he was on a ventilator 24 hours a day and he couldn’t even reach his hand out or turn his head from side to side,” Elizabeth said. “When it comes to his physical development, he now demonstrates greater leg strength, he can stand with assistance, and he not only reaches for things, he can take a ball and place it down a shute or play with a farm animal toy. 

“At first, we were seeing Oliver reach milestones while Tate was stumbling like a newborn, but now that Tate has started to catch up, we’re starting to see the both of them interacting with each other, and it’s been the leveling of the playing field that has brought us the most joy.” 

During the first few months of Tate’s life, the staff at the Starkweather Elementary School – where Elizabeth was a teacher – dropped off breakfasts and dinners at the Lambert doorstep. Two of her former students contacted their dance teacher who coordinated three separate collections that raised money to pay for the Lambert’s travel expenses back and forth to CHOP. In the spirit of that selflessness, the Lamberts are discovering ways that they can bring wider attention to PURA Syndrome, in the manner of Jean Weinberg and Kyle Czepiel, the founders of Jack’s Tomorrow, named after their son, Jack, who was born in 2019 and diagnosed with PURA Syndrome. Since its founding, the agency has raised hundreds of thousands of dollars for PURA Syndrome research through benefit events like a cycling race and a golf tournament.  

On a recent overnight trip, Elizabeth and Greg began discussing the idea of organizing a fundraising concert at Tate’s grandmother’s home, with all proceeds going to Jack’s Tomorrow. 

‘He shows me what each day looks like’ 

“Having been a pediatric nurse for the past 25 years, and having had two babies myself, I know that every baby has their own personality,” Paris said. “Tate is a very easy-going baby. When his brother Oliver cries, it’s fairly normal for a child of that age to do so, but when Tate cries, everybody stops what they are doing, because he doesn’t cry often.  

“Tate recognizes everyone. He smiles, he laughs, and he loves to look through picture books. While Oliver is running all around, Tate just wants to sit in my lap and cuddle. There are times when I am having a tough day, and yet I know that I’m going to see Tate later and it’s like a kind of therapy for me. With Tate, it’s about taking it day by day, and he shows me what each day looks like.”  

“He is the most calm, sweet mannered little ray of sunshine,” Elizabeth said in describing her son. “Tate wakes up in the morning with a huge smile on his face and he reaches his hands out because he wants to touch your face and play with your hair.”  

To learn more about the Jack’s Tomorrow Foundation, visit www.jackstomorrow.org. 

To contact Staff Writer Richard L. Gaw, email [email protected].