Your child received a chronic diagnosis. Now what?

Countless families find themselves at Texas Children’s when a child has been diagnosed with a chronic, lifelong condition, and these situations undoubtedly impact the whole family. Several questions will begin to float in the air following the initial diagnosis, causing a lot of fear and anxiety. How will we afford these medical bills? Is my child going to be able to go to school? Will our lives ever feel normal again? Our social workers at Texas Children’s are available to help navigate these families through uncertainty, providing an ongoing, supportive presence alongside a variety of helpful resources throughout the patient’s journey of managing a chronic condition.

Jaclyn Fielder was born with Cornelia de Lange syndrome (CdLS), a developmental disorder typically characterized by slow growth after birth, intellectual disability and bone abnormalities in the arms, hands and fingers. Most children with this disorder have a short stature, low weight, thin eyebrows meeting in the middle, long eyelashes and a short, upturned nose. Jaclyn, along with most others with this disorder, will require ongoing medical care throughout her life. 

Jaclyn suffers from seizures, hearing loss, intestinal issues, and behavioral and developmental impairments. She’s currently 26 years old, weighs 28 pounds and stands at just a little over 3 feet tall. Shortly after her birth, Jaclyn was transferred to Texas Children’s Hospital and has continued her care here ever since. During this time, her parents, Bill and Luanna “Lu” Fielder, have cared for Jaclyn at home. Staff members at Texas Children’s have also supported Jaclyn, involving several members from a multidisciplinary team. Among this team, a social worker is usually present to provide emotional support and guidance regarding resources and services available to the family, alleviating a lot of the stress that comes with receiving care in a large hospital setting.

Lu was able to share details on the impact Jaclyn’s disorder has made on the family over the past several years and words of wisdom for other parents of children with chronic conditions.

It’s understandably difficult to manage a chronic condition requiring numerous medical appointments, medications, equipment pieces – the list goes on. Social workers are available to help with all of these adjustments needed for ongoing patient care. Lu highlighted the importance of having a strong support system with her spouse, family members, friends and her own personal faith. It’s common to hear that these kind of support systems are incredibly beneficial for the impacted family in moments of difficulty and pain. Lu also recommended searching for a foundation representing your child’s diagnosis as soon as it’s received. The CdLS Foundation has provided a lot of support and security for the Fielder family, as it connected them with online support groups of other CdLS parents and updates on medical research and advancements for CdLS. Lu also attends yearly conferences, which helps her feel incredibly connected to the this community. “Each child with CdLS has a difference in common,” said Lu, “but it’s beautiful to find the individual differences each child brings with them.”

Lu also mentioned the importance of having a good relationship with the child’s medical team when managing care for a medically complex case, and social workers can actually help to facilitate this relationship. Lu says that a great care plan is one in which “you listen to the doctors, and the doctors listen to you.” 

“Don’t be afraid to voice your concerns, and don’t be shy to ask for clarification. I had no idea what ‘vascular’ even meant until I asked,” said Lu. “Now I know what I’m working with, and I feel more confident.”

When you’re caring for a child who is chronically disabled, many struggle financially to hold up medical costs. Lu recommends placing your disabled child through a Medicaid waver program as early as possible. These allow the state to provide support to the family and waive certain requirements, like income, requested by traditional Medicaid programs. Similar waiver programs could also come with additional respite and/or provider benefits. The Department of State Health Services (DSHS) and Health and Human Services Commission (HHSC), alongside HHSC’s Texas Department of Aging and Disability Services (DADS), typically manage these waiver programs. Even though Jaclyn was on a waiver waiting list for 10 years, Lu now receives full-fledged health benefits on Jaclyn’s behalf and is able to hire and pay her family to provide care for her. As part of her waiver program, Jaclyn also has a social worker whose job is to provide assistance with yearly waiver renewals and optimize Jaclyn’s eligibility for multiple other program benefits. 

Taking care of a child with a chronic medical condition can be incredibly challenging. However, accessing the right resources, services and medical care can help reduce many of the challenges faced. The following resources might be helpful:

• Texas Children’s Patient and Family Support Services
  • Social Work
  • Child Life
  • Family Advocacy
• DePelchin Children’s Center
• Mental Health America
• The Harris Center for Mental Health and IDD
• U.S. Social Security – Apply for Disability Benefits
• Legacy Community Health