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Through the eyes of a Child Life Specialist

For this month’s Blog we are excited to have had an opportunity to interview Lindsey Welch, BS, CCLS, CTRS, CIMI. Yes, that is a lot of initials after one name. What those letters spell to us is “godsend”. Lindsey is a Child Life Specialist at Marshfield Children’s Hospital. It’s a position that I don’t know if a lot of people know about, that is of course, until you are in a situation where they enter your life. Lindsey was there for Maddy and us throughout our journey.

I met her the night we rushed Maddy over to Marshfield upon hearing that news that she had this growth that was likely cancer. There was a lot of that time that was a blur of emotions, questions and fear but I remember vividly my first conversation with Lindsey. That night when we got to the hospital, there was a lot going on around us and a lot of conversations with new and different medical professionals talking about things I was brand new to. My head was swimming. Lindsey kind of pulled me aside and asked “Have you told Maddy why she is here? Have you told her what cancer is?” I didn’t say anything but my face must have told it all. Suddenly I realized I only told Maddy that she was sick and we needed to go to the hospital, nothing specifically about why we were there, what she would be going through or what any of this means. I failed. I failed hard for my sick daughter. In that time, I was thinking about logistics, working through my fears, working through understanding what was going on around me and didn’t take the time I should have to try to talk to this six year old who was just pulled away from what was her normal life into a room filled with new and strange people and machines. Lindsey picked up on this in half a second of looking at me after asking those questions. She said, if you would like I can help explain things to her. At that moment I realized how important this role is. I hadn’t even thought of how to explain what cancer is to a 6 year old. How do you explain that everything she knows is about to change?

Over the course of our journey child life played so many important parts to helping Maddy. They were there to comfort her as she was being sedated for procedures, they were there with games, crafts and toys to help those long stays be a little more comfortable for Maddy. There was art therapy, there was music therapy. There was bingo and video games. There were all kinds of things that they helped with. And toward the end, those tough times for all of us, they were there for that too. Helping us explain things to Maddy’s sisters, helping us figure out what to do and finding us help. Over the years we laughed together and we cried together. These folks are worth their weight in gold and I was thrilled that Lindsey agreed to answer some questions for us.

Can you tell us a little bit about what “Child Life” is and what you think people should know about it?

Child Life is often a field that is not well known until you have to use it. My role in the medical setting is to help kids and their families understand the WHAT and the WHY in the medical environment. For example, kids often want to know “what is going to happen to me” so we prepare them for the procedures they will experience including IV starts, lab draws, surgery, MRI or CT scans, etc. and then WHY these procedures need to happen. Kids understand and listen to much more than we give them credit for so being honest with them, even if it might seem like scary information at the time, helps them to trust what they are being told is true and build trust within their family and the medical staff. In addition, we can assist the patient and family in developing coping tools to help kids successfully complete these procedures with the least amount of trauma possible. Distraction is one of the biggest tools that we use to facilitate coping in the medical setting. For those patients that have to spend days or weeks at Marshfield Children’s Hospital we encourage them to be kids by getting to know their hobbies and interests and then creating play activities, including games and crafts for the teens, that promote opportunities for socialization, continued development, normalcy and decrease feelings of isolation and loneliness. Oftentimes these activities also encourage children to discuss and share how they are feeling about their illness, hospitalization, etc so they are able to process their medical experience in a fun way. We get to plan Holiday events that these kids would otherwise be taking part in at school or home if they weren’t in the hospital. Our goal is to support the entire family, including the parents and siblings, helping them to understand and invite them to participate in the activities when they are able to be present (Pre-COVID) to promote confidence and strength within the family unit. As I share below, sometimes the WHAT and the WHY includes discussing death and when children won’t get better. Though this is a difficult aspect of the job, it is a necessary aspect, to help parents know how to talk about death with their other children, and also provide opportunities for families to make memories even at the end of life. In addition to working with children undergoing medical procedures or hospitalization, these concepts of support can also be applied to children of adult patients as well. We will often get consults asking for help with children who have a parent or grandparent with an illness or who is at end of life as well and it is just as important to help them understand the WHAT and the WHY as well.

After saying all that, I think many people truly don’t understand all that Child Life is involved in. People may see bits and pieces of what we do and think “how great that Marshfield Children’s has someone to play with the kids to keep them entertained.” However, Child Life is SO much more than that. Play is the tool that is used to build confidence, overcome fear and promote hope for all those kids big and small going through a medical crisis, but it’s not just entertainment.

How long have you been in Child Life?

I graduated with my degree in May of 2009 and have been a Certified Child Life Specialist ever since, so 11 years! My first two years in the field were in Arizona at Tucson Medical Center and the following 9 years have been at Marshfield Children’s Hospital.

How did you get into this field?

I thought I wanted to be a doctor but when I began attending the Pre-Med meetings on the UW-LaCrosse campus and gained a better understanding of the physician role I realized that I wanted to be a little bit more hands on with kids. I had no idea the Child Life field existed at the time, but after talking with my advisor about what I envisioned my future job to look like she suggested I research Child Life. I instantly knew it was what I wanted to do as it perfectly combined the medical field with teaching children. It’s a very competitive field so I knew I was going to need to find volunteer opportunities to gain experience and do well in my classes to obtain an internship, but when you are passionate about something it makes the journey easy and worthwhile!

What is the most difficult part of your job?

People often ask me how I do my job and my response is always “Children and families are going to experience cancer, accidents, illness and sometimes death regardless of if I’m helping them process their medical event so I’d rather be available to help than for children and families to go through these things without the proper support and tools. However, that doesn’t mean there isn’t heartache, suffering and grief and those times are hard. Again, if it has to be I’m honored to be able to offer resources and activities that preserve the memory of the child or loved one, but I would much rather be celebrating with the child and family as the end of treatment bell is rung than creating beautiful end of life memories.

What is the most rewarding part of your job?

So many children who are diagnosed with cancer experience many painful pokes and procedures not only throughout their treatment, but especially the first 1-2 weeks. Seeing them so scared is heartbreaking, but helping them to conquer their fears and see them so proud of themselves is so rewarding. I’ve had a child ask me to have his upcoming birthday party in the hospital playroom 2 weeks after being diagnosed with leukemia. We know we are doing something right as a Children’s Hospital, if kids can view it as a “fun” place despite all they go through medically.

How have things been impacted since the start of the pandemic and what extra difficulties have you seen through this time?

First off, we had a time period where we were unable to collect donations until we had a safe process in place to be able to do that. The kids certainly didn’t go without, but it goes to show how important donations are as we did not have the number and quality of items that we were used to having. Now that we have a process in place to safely accept these donations again we don’t have to be quite as selective as we had been.

Being in the hospital or having to visit the clinic is stressful at any point in time. But it’s especially stressful when siblings and extended family can’t be present for support. In order to create a safe environment for all those receiving healthcare at Marshfield Children’s the number of people entering the facility have to be limited. It’s heartbreaking to see additional barriers added to families that are already feeling separated and stressed about how best to split their time. We’ve been encouraging virtual visits with family but we also realize it’s not the same as having those family members physically present.

In addition, children and families are interacting with staff that have masks and face shields on constantly which can make the medical environment more scary for children and feel less personable. Again, this is necessary for the health and safety of all receiving medical treatment so we have had to adapt to make kids feel more comfortable. Our Child Life team is wearing pictures of our faces without our masks that say “Under this Mask There is a Smile” to show kids we are still the same us! It’s also important to realize these kids might need a little extra time to warm up to us, but if we keep coming to play with them we can eventually warm them over!

Lastly, we have unfortunately been unable to hold our end of treatment celebrations with families inside of the medical facility. These kids still get to ring the bell and we hang a banner for them, but we used to be able to invite immediate family and many staff members into the room for the celebration and we are unable to do that with our social distancing guidelines at this time. Fortunately, families are still able to pick up their cake and take the sparkle bags home to celebrate with their family and friends outside of the facility. In addition to continuing to provide the bags and cake, our Child Life Team has begun making videos sharing congratulations messages with the child and family in lieu of the well wishes they would receive at the party.

Can you share a memory of a time that you spent with Maddy?

No, but I can share a few! ;)

The time Maddy shocked me and made me most proud:

I had talked with Heidi and Josh shortly after Maddy’s diagnosis of Wilm’s tumor and discussed what Maddy already knew and what they wanted her to know. Heidi and Josh were understandably nervous and unsure of how to tell Maddy that she had cancer and were most concerned about how she would react to losing her hair. I brought in different colored beads that day and we talked about healthy cells and then I introduced sick cells and how Maddy had sick cells growing on her kidney and what the doctors needed to do to get rid of those sick cells. We talked about chemotherapy and how not only do those medicines get rid of sick cells but they can get rid of healthy cells too for a little while which is why people start to lose their hair and feel tired and sick. Maddy basically shrugged this information off, like it was no big deal and chose to get a cute new cut while waiting for her hair to fall out. She didn’t cry about losing her hair or about having cancer. I remember leaving her room that day in awe of how resilient she was!

The time Maddy made me laugh:

I will never forget waiting to go into surgery with her for her biopsy and kidney removal and though she was nervous, she chose to be positive, the same way she approached her entire treatment. We played a poop game and laughed so hard while waiting to go back. I expected to be providing distraction to help her feel less nervous about surgery, but I DID NOT expect that distraction would be poop. She LOVED poop and farts and knew it was just what she and her parents needed to get through a scary moment with so much laughter. I’m giggling as I write this. :)

The time Maddy challenged me:

Another thing Maddy loved was arts and crafts. She was SO creative! Maddy NEVER missed a group activity session and whether she was there by herself or with other kids she enjoyed being out of her room and working on something. One day I had planned an activity (I can’t even remember what it was that I planned) but Maddy decided that wasn’t what she wanted to do. When I told her she could plan the activity she said she wanted to make the Teenage Mutant Ninja Turtles and their house in the sewer. Uhhh...WHAT?! I panicked a bit! I might be a Child Life Specialist, but I most certainly was not THAT creative. How were we going to do that?! I quickly realized I didn’t need to fret. This girl had it all planned out. All we needed was some construction paper, card stock, toilet paper rolls and pipe cleaners. I think we stopped short of making their house in the sewer but we had a blast making things up as we went. It always reminds me of the grand idea’s Maddy had and how much she loved to put those ideas into motion and create things with minimal supplies.

Can you share any impacts or stories of how you feel Mighty Maddy’s Mission has helped a family?

There are so many stories I can share but if I had to choose just one I would say the addition of the end of treatment bell and sparkle bags to facilitate a party has had the most profound impact. We had one family that invited the child’s entire football team to celebrate the end of treatment and after watching all of his friends cheer as he rang the bell there was not a dry eye in the room. That moment was made possible because of Mighty Maddy’s Mission. Kids obviously completed their treatment prior to the bell, but there was a very anticlimactic feel to the end of treatment. Without the bell and the sparkle bag which provides the cake, decorations and supplies it was simply just “Congratulations!” Aside from those celebrations children know each time they come to the clinic or hospital for a visit they get to pick a toy or gift card from Mighty Maddy’s Toy Shop. Countless families have told us, this is the highlight of their visit to Marshfield Children’s. Though Maddy is not physically here handing out these toys, her vision of providing happiness to children and families each time they enter the facility for treatment has come true and her presence is most definitely felt.

Through the three years of on and off treatment that Maddy had to go through we went to several different Children’s hospitals and worked with numerous medical professionals from dedicated nurses and physicians to facilities workers who worked hard to keep everything clean and tidy. We have been blessed with all of their expertise and they are all important. That said I can tell you that from the moment we were introduced to Child Life we realized what a critical role they played in the entire process of childhood patient care. They are a blessing and a comfort for families. Knowing you had a kind and caring person whose sole responsibility during sedation or procedure is to try to help keep your child comfortable really means the world to us. When things got tough for Maddy from an emotional side in the hospital and she was done having mom and dad try to comfort her, child life would step in and help her. We are so lucky to have had Child Life and Lindsey in particular enter our lives and spend time with Maddy. Thank you Child Life Specialists for all that you do and thank you Lindsey for taking your time to share with all of us!

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