Interview with Ann Hendrick, who has worked as Manager of the Family Center for three years
Q: What are some of the typical circumstances children visiting the Family Center are facing?
A: It’s very wide. Some people are waiting on surgeries. They’ve gotten up early and come from maybe an hour away, maybe three hours away. They've checked their child in and they have maybe a four, five, six, seven hour surgery. We also have people who come for clinical appointments so they may have an appointment at ten and an appointment at two. So the Family Center provides a respite space for them to enjoy while they're waiting. We also have inpatients who come down for special events like Musical Theatre students (laughs). They obviously have to come down with a parent or a nurse or volunteer or child life specialist.
Q: How long have most of these patients been here?
A: You know, some of them have grown up here. So the range of stay could be just a day after a surgery or they could be chronic. They could have several chronic illnesses and maybe they're here all the time. But there are kids who feel like this is their home. They've spent more time in the hospital than they have at school.
Q: What are some things some of the kids have gone through?
A: We’re considered a critical care hospital so we get the sickest of the sick. So we don't get the common things. So, for example, we have lots of CF (cystic fibrosis) patients. That's very chronic most of those kids spend very little time in school because they catch too many bugs. CF kids basically grow up here. We do a ton of surgeries-- everything from ear tubes to brain surgeries to spinal surgeries. Mott is really known for is its cardiovascular surgery--we have some of the best surgeons in the country. We get emergencies. We get people who've lost one member of their family and the others are in critical care for a long time. You know, I hate those. Car accidents are really hard.
Q: Can you shed some light on what the parents are going through?
A: It's very, very stressful. I mean, most parents would probably tell you that they would rather be sick themselves than their child sick You probably remember one of the times you were singing to this little blond girl and she was four and her mom was filming it and tears were streaming down her face and she was so happy her daughter was happy. Because, I mean she wasn't even eating at that point because she couldn't. So just to see your child be joyful and enjoy those few minutes just means so much to parents. That's why they cry. That's why we cry. And music just has that...it just reaches us all in a very special way.
Q: What are some of the patients feeling?
A: Well, a lot of times their medications dull them down. So the kids who are actually here because they're ill, you know they're expressing their emotions a little bit but if they weren't so medicated and so ill they'd be even more joyful. So as you're singing to a child who is ill and you get even a little bit of a smile, that's huge! Because they are so medicated and in pain and they've been through so much. The siblings need attention too because when you have a couple of children in your family—one, two, three, four, and one of them is ill, as a parent all of your attention goes to that one child and you feel so bad for the other kids because you're not giving them that attention. So when those parents bring those parents here and they see the siblings having fun at the hospital when normally they're told “don't do that, don’t touch that don't do this, and they're having fun, they’re really happy to see that too. It's hard for siblings and some of them are so young that they don't understand what their parents are going through, what their siblings are going through. Some of them see it as just they're not getting their mom and dad time so that's a way for them to get some attention and joy too.
"Hope is an important aspect of healing and everyone views hope differently. Some people want hope for the future—you know, for their child to be able to go to college and some people just want hope for the next day, the next hour, the next few minutes."
-Ann Hendrick, Manager of Mott Family Center
According to mottchildren.org,
Mott Children's Hospital had an APR-DGR of 2.3 in 2014. "The APR-DRG Case Mix Index stands for "all patient refined diagnostic related group." The APR-DRG is a measurement created for the purpose of administrative comparison of how sick patients are. Factors like the type of illness the patient has and other complicating factors get put into a methodology that equates to a number. Hospitals with an "average" level of complication to the patients they see have an APR-DRG of 1.0 Having a high APR-DRG means that we see patients that are significantly sicker and more complicated to treat. To meet these patients needs, we have to provide a higher level of resources both in technology and staff."
I perform in the Family Center, a respite and learning and information center for people who are either inpatient or in between clinical appointments or waiting to be seen at Children's Emergency Services. Working in the Family Center, I have seen the reality of what these patients go through.
I've seen kids pale and silent, barely awake or able to respond. Sometimes, I'll be asked to sing in a patient's room. The nurses will tell me, "We can't tell you anything more than this, but the diagnosis changed and time is limited. You'll understand when you walk in. We think it would mean a lot to the family."
One time while singing, I noticed a girl who was barely present and seemed unmoved by the music or anything happening around her. I tried to talk to her, but she wouldn't interact. So I sat quietly with her, talking every now and then. I found out her favorite Disney song from a family member and sang it. After an hour, she began to talk and even laugh. I later found out that she survived a car wreck the day before that took the lives of her family members. That was the first time she'd spoken since.
Another time, I was singing on the 12th Floor, which is where many patients are in Contact Control, meaning that they can't come out of their rooms to interact. So, I'll sing in the hallways and the patients and familes watch through the glass of their hospital rooms. I was singing "Let It Go" and heard someone suddenly screaming "Let it go! Let it go!" in a loud voice. I glanced over and saw a young boy in his hospital bed, hooked up to machines and without legs with his eyes closed and arms flung out as he screamed it over and over again.
There was one precious little girl I became particularly close to who was so little for her age, but so full of wisdom beyond her years. She had been in and out of the hospital her whole life and was obviously quite sick. One week, she told me that she was going to wear her coronation ball dress (from the film FROZEN) the next Friday so she could sing with me. But, the next Friday she never came down. At the end of the afternoon, her mom came running down and explained that she had to have an emergency infusion. She said she was distraught that she coudn't come down and asked that I go up. I went up to find her unclothed, tiny and barely coherent in a big white hospital bed hooked up to a humming machine. When they said, "Look who came to sing to you!", she suddenly woke up. She insited that they stand her up and put her full Anna costume on- boots, necklace, braids, dress and all. She sang every single word of "For the First Time in Forever" and "Let It Go" with me while hooked up to the machine. Everyone was fighting back tears, but she was completely full of joy. That was the last time I ever saw her. I pray that it was because she got better and went home. But the reality is, I will never know.
The Family Center at Mott Children's Hospital.