Caring for a Child with Complex Medical Needs

Caring for children with complex medical needs can be challenging but very rewarding. In many cases around the clock care is required. In these cases, home health care can help. 

"Melissa can’t see me, but as soon as she hears my voice, she’ll reach out and pull me down toward her for my morning hug,” says Nicole White, LPN. “It’s the best way to start the day.”

Nicole, a pediatric nurse with BAYADA Home Health Care, provides care for her client, Melissa Ross, 20, of Mays Landing, three to four days a week.

She is a member of a round-the-clock team of nurses who provides skilled care for Melissa’s many medical needs caused by her illness, Batten disease.

Batten disease is a rare, inherited disorder of the nervous system that usually begins in childhood, affecting a little more than 1 in 100,000 births. There is no cure or treatment and most children do not live beyond their teens or twenties.

Melissa has lost much of her cognitive and neurological functioning as well as her sight, and is no longer able to eat solid foods, walk, or even talk.

But that hasn’t prevented her from communicating with Nicole. The morning hug – which tells Nicole that Melissa is happy she’s there – says it all.

“Melissa feels my face and touches the rings on my fingers,” says Nicole. “She knows I’m there and she welcomes me with that hug.”

A Devastating Diagnosis

According to Dana Ross, Melissa – or “Lissa” as she's called – had a normal birth and reached all her developmental milestones right on target – even a little ahead. “Lissa walked early and was very smart,” says Dana. “But at age seven she started losing her sight and shortly afterward, was completely blind.” Initially she was misdiagnosed with Retinitis Pigmentosa, an inherited, degenerative eye disease that can often cause blindness. 

Soon after, though, Melissa began experiencing seizures – several a day – and a noticeable loss of motor function. Realizing that Retinitis Pigmentosa couldn’t be responsible for these symptoms, Dana and her husband, Daniel, took Melissa from specialist to specialist until they had the devastating diagnosis of Batten disease.

 “No one in our families had Batten disease. We were in shock,” says Dana. Unknown to Dana and Daniel, they both carried the gene for Batten disease and tragically, passed the disease to Melissa. Their son, 18 year old Daniel, carries the gene as well but, fortunately, does not have the disease. 

Although Melissa was diagnosed in 2001, it wasn’t until 2009 that she really began to decline.  Dana, who had been Melissa’s primary caregiver, realized she could no longer care for her daughter’s increasingly complex medical needs without help. That’s when she called BAYADA.

“I can honestly say that if it weren’t for Lissa’s wonderful team of nurses, I don’t think she would still be here with us,” says Dana. “BAYADA is the best thing to happen to my family.”

Finding Family in Unexpected Places

Another member of Melissa’s home health care team, Heather Jones, LPN, arranged a meeting between Dana, Melissa, and Noah Coughlin, a 29 year old from California, who was running Coast to Coast – for the second time – to raise awareness for Batten disease. During his run through the state of New Jersey in November 2013, they met and Dana was overwhelmed by his passion and commitment to the cause.

“Can you imagine someone we didn’t even know running across the country for my daughter? He is amazing. We consider him part of the family!”

During this difficult time Melissa has united a most unexpected team of supporters. The BAYADA nurses feel like they’re family, as well. “I am so grateful to be part of this wonderful family and I’m happy I can help give Melissa a better quality of life,” says Nicole. “Melissa and I have a very special bond.”

Mom agrees.  “Nicole is wonderful, as are all of Lissa’s nurses,” says Dana. “We all know our time with Lissa is limited, so we cherish every moment.” 

BAYADA Answers the Call

Home Health Care provides a broad range of services for children of all ages. BAYADA employs teams of skilled pediatric professionals who are committed to keeping children with complex medical needs safe at home. 

Our care includes:

• Specialized care at home or in the school setting
• Pediatric nurses experienced in complex, high-tech care including tracheostomy and ventilator care
• Clinical support 24 hours a day 7 days a week 
• A variety of payment options

BAYADA Home Health Care is dedicated to our clients, taking a family-centered approach to care. Our team of professionals share a commitment to compassion, excellence, and reliability -- The BAYADA Way.