What Hoda Kotb Missed in Her Conversation About Parenting a Child in the Hospital

Hoda Kotb, the host of “The Today Show” on NBC, recently returned to the airways explaining that her mysterious two-week absence from the show was due to a health scare, and ICU hospitalization with her 3-year-old daughter. Clearly shaken, but grateful to be on the other sides, she shared a tender mom-felt moment with co-host Savannah Guthrie.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

“When your child is ill, the amount of gratitude you can have for people who helped you out,” Kotb explained, “I’m grateful for the doctors at Weill Cornell who were amazing, and the nurses. And I’m grateful for my family and I’m grateful to friends like you who were there every single day.”

I am happy for Hoda that her experience was positive and hope that her daughter will be blessed with an opportunity to return to good health. I hope their life returns to “normal” and Hoda can get back to work and put this whole thing behind her.

When medicine works, health care is provided, and the patient gets the physical care and the emotional support needed, it is a very good thing. But as a parent and patient advocate who has spent the last 12 years supporting families whose children’s medical needs are complicated, I must admit, I felt a real twinge of envy.

For many who live with rare, hard-to-diagnose or complex chronic illness, interactions with our health care system do not always go well.

According to the National Institute of Health, the diagnostic time for someone living with a rare disease takes between three to 15 years. This can be a lifetime for a child and the diagnostic journey itself can be challenging and create frustration, mistrust and even trauma for the parents and child alike.

My children live with Ehlers-Danlos syndrome (EDS), a not so rare, connective tissue disease that has been historically neglected and highly misunderstood. This genetic defect in collagen can create a confusing clinical picture, as symptoms wax and wane, and presentation can vary across multiple body systems. It is also important to mention that puberty can wreak havoc.

Like so many conditions that do not have a clear diagnostic test, or established standard of care for treatment, EDS patients must depend on the compassion and curiosity of the physicians they see. But doctors are human and (let’s face it) short on time. Medicine is based on a process of diagnostic testing and measurable metrics, something that many forms and comorbid conditions associated with EDS still lack.

So I was not surprised to read Dr. Clair Francomano’s study which reported that 96% of EDS patients she surveyed reported challenges navigating the health care system, or that 85% said they avoided specific clinicians because of negative experiences. Worse health outcomes due to improper care also was noted by 81% of patients interviewed.

There is a reason that most people living with Ehlers-Danlos syndrome collectively share stories on social media of being discounted or being unable to access the medical care that they need. There is simply not enough awareness and large gaps in care still exist.

I will always remember how awful it felt, packing up my child’s things and wheeling her down to the lobby to be discharged after spending a week in the hospital and being sent home in the same condition that we had come in. We had many hospital admissions and not all were positive or productive, some even traumatic for my child. I was left with no choice but to try and soften the blow for my daughter and figure out ways to still help her feel supported.

Hoda’s experience clearly impacted her as a mother. She went onto explain,

“Anyone who’s ever gone through an illness with a child, I thought I understood you, but I don’t. I didn’t, until you’re sitting in that position. For every single person who’s going through some stuff, I get it.”

I think Hoda might be surprised to learn that she that she still doesn’t. There is an entire population of children and parents who continue to struggle to get the care that they need.