On June 9, with her husband Greg by her side, Elizabeth Lambert of West Grove gave birth to two boys, Oliver and Tate, at the Chester County Hospital. 

The twins were born prematurely at 33 weeks, but after a six-week stay in the NCIU, Oliver was able to come home with his parents. For Tate, however, the complications that he endured from birth were multiplying. He had premature apnea and difficulty breathing, and as the weeks went by, he went through a several rounds of testing, yet nothing was being firmly detected. He was then transferred to the Children’s Hospital of Philadelphia (CHOP) in July, and over the next several weeks, he underwent testing by the hospital’s neurology, pulmonary and genetic departments. 

Finally, this past September, genetic testing revealed that the three-month-old was diagnosed with PURA syndrome, an extremely 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.

Because babies born with PURA syndrome often have feeding or breathing difficulties, they require the use of medical support like tracheas and feeding tubes, and for Tate, his trachea and feeding tubes are monitored and cleaned by CHOP nurses, while his heart rate and oxygen levels require around-the-clock attention. 

Elizabeth makes the daily, three-hour round trip to CHOP every day – 42 miles each way – to see Tate, often in the company of Greg and Oliver, and on Thanksgiving morning, the Lamberts were all together. Over the past few months, Elizabeth and Greg have taken training classes with CHOP officials, to the point where they are efficient in tasks such as trachea care and administration and how to monitor respiratory devices that include vents and oxygen tanks. 

In short, Greg and Elizabeth now have all of what is required to bring Tate home, except for one: They cannot find skilled, in-home nurses that are required to join the Lamberts in providing care for Tate.

“In order to bring Tate home, the rule of the thumb is that the hospital wants to see 80 percent of the hours caring for him covered by nursing,” Elizabeth said. “Greg and I are now trained to care for Tate, but he needs 24-hour eyes on him, so if we’re caring for him as his parents and his medical caretakers, we at least need to get sleep.” 

The Lamberts are working with BAYADA Home Health Care in Downingtown to find a way to fill in that much-needed gap, but so far, that gap has not been filled. Meanwhile, the Lambert home has been retrofitted for Tate; the family’s living room has been converted into their son’s bedroom.

“The three things the hospital wants to see in order to allow Tate to come home with us are that Tate is ready medically, which he is, that his parents are trained, which we are, and the availability of overnight healthcare,” said Elizabeth, who is on a maternity leave from her job as a first-grade teacher at Starkweather Elementary School in West Chester. “The staff at BAYADA are trying to get that 80 percent coverage for us and finding certified health care professionals in the correct areas that also live close enough to West Grove.

“The difficulty is that everybody in the nursing field is aware that overnight nurses don’t make as much money as they would in a hospital, so that nurses with the qualifications to do a job like this are not likely to come work in a home where it’s not as lucrative.”

‘Access to care’

The struggle to find those qualified health care professionals willing to work in a home is like attempting to find a proverbial needle in a haystack, said BAYADA Director Bradley Needham. Home care providers are in competition with hospitals and nursing homes when it comes to providing competitive wages for qualified nurses, he said, and for parents like the Lamberts who have children with critical medical needs, it’s even more challenging.

“First and foremost, there are not enough nurses in the area and in the country to take care of everybody in need,” Needham said. “We need to be able to attract people to become nurses, but when you whittle it down to a homecare setting, we can’t compete with local facilities from a wage or supplemental standpoint.

“If you look at Tate’s scenario specifically, you can’t just send any nurse out there. For his level of care, you need specific training to provide those services quickly and safely. Not only are we talking about meeting the acuity level, they need to also meet the location, the times and the shifts, and it also has to be a situation where the family likes the nurse, and the nurse likes the family. It’s a ‘unicorn’ scenario where not only are there not enough matches, there are so many intervals needed to ensure that it will be a good fit.”

Despite BAYADA’s daily front-and-center work with the Lamberts to find that perfect caretaker, Needham said that the search is still on. More funding needs to be devoted to home healthcare, he said.

“This whole scenario is larger than what’s happening with the Tates and with BAYADA, because what we’re really facing is an access to care issue in general,” he said. “That’s what we’re trying to get legislators to understand. It’s not about BAYADA getting paid more and getting Tate home, it’s about bringing everybody home that we can. If these individuals remain in our hospitals and legislation continues to drive funding towards facility and hospital systems, no one will be able to come home.”

‘We get smiles from him sometimes’

Less than three weeks before Christmas, the Lambert’s dream of bringing Tate home to West Grove in time for the holiday remains a hopeful aspiration for Greg and Elizabeth, but one touched with the reality that when that healthcare professional is eventually found, it will serve as merely one solution in a complicated reality.

“When you have twins, you have a vision of normalcy that imagines them spending their whole infancy together,” Elizabeth said. “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.

“We have come to the realization that our normal is going to look different than a lot of other people’s idea of normal,” she added. “We have been living with the realization of when Tate comes home, we know that there will be things that he will not be able to do. When he was first diagnosed, we googled facts that said that he may never walk or talk,’ but we choose to believe that maybe he will. We get some smiles from him sometimes. When he comes home, we will be able to celebrate what both boys can do.”

To lean about the work of BAYADA Home Services, visit www.bayada.com.

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