Interview with the Mother of a TBI Survivor

Sarah Scantlin currently is an inpatient at the University of Kansas Medical Center’s rehabilitation unit. Her story has received national attention in the wake of the Terri Schiavo case. Approximately 20 years ago, Sarah was an 18-year-old freshman in college when she suffered a severe head injury. Prior to her admittance at KU, she resided at a long-term care facility, most likely with Locked-In Syndrome. She spoke her first words earlier this year and she is actively participating in KU’s inpatient rehabilitation program. Sarah’s care has included the alteration of her seizure medication, treatment of severe osteoporosis, Botox injections, and numerous completed and planned orthopedic procedures to release upper and lower extremity contractures. This interview was held with Sarah’s mother.

Tell us about the initial injury to Sarah.

We received a call at midnight from her best friend saying she had been hurt. I said, “How bad is it? And she said, ‘I don’t know, but it’s bad.’” She suffered a severe head injury after being hit by a drunk driver. We spent the next seven months at Wesley Hospital in Wichita with most of that time spent in rehab. She has since resided in a nursing home.

How did you feel when Sarah began talking?

For 17 years, Sarah never made a sound, and didn’t move except to kick her legs and pull her arms to her chest. I didn’t think Sarah would ever speak again, but the thought of her only being able to make a noise was disheartening. To hear her say “Hi Mom” for the first time was a thrill and 20 years evaporated immediately. But even today, there are limitations – she still isn’t sitting there talking like you and I. After 20 years, I’ve learned to live day by day. We celebrate what she did today and then wonder what she will do tomorrow.

From your perspective, are there differences in rehabilitation now versus 20 years ago?

The equipment is a little different but overall it feels about the same. One thing that is the same is that patients respond differently to various therapists. If they don’t work well with a particular therapist, it’s almost a waste of time.

What would you most like to tell physiatrists who will soon complete their residencies and begin their own practices?

First, it’s important for staff to simply ask family members, “Are you doing ok?” Kind words are just wonderful – whether it comes from the doctor, nurse, aide, or the person cleaning the room. If someone is not kind to you, it is just devastating. In your mind, you wonder if that attitude is carried over to your family member when you are not there.

Second, talk in a language that the family and patient understand. Most people in traumatic situations don’t listen anyway. But they surely don’t listen if they don’t even understand what is being said to them. If the right hand is not going to work, then say the right hand isn’t going to work. Don’t use all of the medical terminology.

Finally, in my work at the Ronald McDonald House, the biggest complaint I heard from families was that they never saw the doctors. Families like that daily contact, but do not realize that there may not be changes in the day-to-day care.

As a parent, losing a child in the way you knew them 20 years ago and being where you are now, how do you make the transition?

Following her accident, the neurosurgeon was very frank and I listened. He point-blank said that it’s going to be like this and anything beyond this would be frosting on the cake. I had no idea about head injuries or what a frontal lobotomy was. I just started reading and realized our Sarah was not coming back.

Mentally, you have to kill that child and grieve over that child. Then you have to go back to that child as though they are new and start over again. That is the hardest part. When I sat with her for 16 hours a day for a year helping her learn to hold her head up, I realized that I couldn’t do that for the rest of my life. That was no life – it’s wasn’t even sane. You have to turn that person over to someone else – it’s not hard and it’s not easy. You feel guilty when you visit, but you don’t know if she is aware of the time span from the previous visit. I still don’t know when I walk in that room if she knows I was there five minutes ago.

Below is a link to Sarah Scantlin’s personal Web page.

http://www.sarahscantlin.com

 

Linda R. Ladesich, MD, MS

University of Kansas Medical Center

LLadesich@kumc.edu