Can you tell us about what happened to Zoey’s pancreas?
Zoey’s pancreatic injury happened on July 22, 2020. It was an extremely hot day, so Zoey and her brother, Zachary, were inside for most of the day. After dinner, they asked to go outside and ride their bikes. We live in an area where there isn’t much traffic, so they were riding on the street in front of our house and on the one that runs adjacent to us. On one of the turns, Zoey came around the corner, but her bike tire came off the road and slipped onto the gravel on the side of the road. The gravel, caused her bike to slide. The bike fell first and when Zoey landed, she landed on the end of the handlebar, making direct contact with her abdomen over the top of her pancreas. I ran down to the end of the street to help her up. She had the wind knocked out of her, but she was able to get up and walk back to the house. Her stomach was sore, which I thought at first was just from having the wind knocked out of her. I had her sit on the porch and relax. When I checked her belly, she was already getting a bruise over the injury site, which I now know is called a handlebar tattoo. It was in the evening, so the doctor’s office was closed and Covid was still a relatively new thing, so I did not want to go to the emergency room unnecessarily. I was afraid that I was being overly dramatic, because kids fall off their bikes all the time, but I just had a nagging feeling that something wasn’t right. Zoey’s belly was sore, but she was not in an extreme amount of pain, so I continued to monitor her for the next few hours. She still seemed to be okay, but I just could not get rid of the feeling that I really needed to get her checked out.
I reached out to my cousin, Dr. Michele Gortakowski, who is a doctor in Massachusetts. I explained what had happened and she confirmed that it was an injury that should be evaluated, which made me feel better about going to the emergency room. I had planned to go to our local hospital, but the on-call pediatrician recommended that we go to the hospital in the next town over, which is where Geisinger Janet Weis Children’s Hospital is located. We arrived at the emergency room, and they performed blood work and an ultrasound. The ultrasound did not show any abnormalities, but when Zoey’s blood work started to come back, there were abnormalities in it. Her lipase levels were extremely elevated. Normal lipase levels are 13-60 U/L and Zoey’s were at 648 U/L. The doctor was hopeful that the levels were just elevated from the pancreas being bumped in the fall, but the doctor order a CT to be sure. On examination, the surgeons did not find anything abnormal. Her stomach was not distended, she was not in a lot of pain, and she looked well overall. The next lipase level was still elevated, but it had come down to 550 U/L, which seemed like a good sign that all of this was just caused by the bump to her pancreas. The CT was scheduled for first thing the next morning, on July 23 rd, and that was when everything changed. The CT showed that Zoey had:
- AAST grade 3 pancreatic injury of the downstream body with surrounding peripancreatic hematoma.
- Omental contusion with small amount of free fluid anterior to the pancreas.
- Small amount of free fluid in the pelvis.
The surgeon came in and explained the findings to us. We were in complete disbelief after how well she seemed to be doing. The surgeon told us that the force of Zoey hitting the handlebar had pushed her pancreas into her spinal cord, and the spinal cord had caused her pancreas to be virtually cut in half. They gave us two options. The first option was to perform emergency surgery to remove part of her pancreas. It had to be an exploratory surgery because they were unsure if there was damage to her spleen and intestines. The second option was to keep her in the hospital for six weeks for evaluation. There was a very high risk of pseudocysts developing on the pancreas due to the injury, and they would have required surgery if they were to form, along with several other potential serious complications.
We did not know if we were making the right decision, but the emergency surgery seemed like her best option. Zoey was taken in for a lengthy emergency surgery that afternoon and they were forced to remove 60% of her pancreas. She had two phenomenal surgeons that day: Dr. Marc Lessin and Dr. Alfred Kennedy. We trusted them to complete a very dangerous surgery and they could not have done a better job, giving us our happy and healthy little girl back. They were luckily able to save her spleen and there wasn’t any intestinal damage. Zoey was admitted to the pediatric ICU post-surgery, where she received phenomenal care. She was in a great deal of pain, and she had a drain inserted into her pancreas, but by the end of the first day, when she was moved to a regular room, she was up and out of bed and walking the halls of the hospital.
Zoey’s glucose levels fluctuated significantly post-surgery. They were extremely elevated after surgery, but then were dropping quite low afterwards. She had a reading of 46 two days post-surgery. She had not been allowed to eat anything since the evening of her injury though and it took a little sugar being added to her fluids to help regulate her blood sugars. Once they regulated, they have been consistently good ever since. Zoey was able to reintroduce clear liquids on July 26 th and light amounts of food the next day. She continued to do remarkably well, and her pancreas maintained all her levels, even with only 40% of it left. Six days post-surgery, Zoey’s drain was removed from her pancreas and she was able to go home on July 28 th , which just so happens to be her dad’s birthday. Zoey coming home is the best birthday present he’s ever gotten. Zoey was at a high risk for pancreatitis for the first-year post-surgery, but, thankfully, she never got it. She continues to have her A1C monitored every six months, but despite her distal pancreatectomy, her pancreas continues to regulate itself and to do what it needs to do. We could not have asked for better results and we are so thankful to the doctors and nurses who took such great care of Zoey.
What has her life been like since the surgery? Has she had pancreatitis episodes?
It feels like a miracle, but Zoey’s life has been relatively normal since her surgery. She went through a six-week recovery, but once she was cleared by her surgeons, she was back on the soccer field that very same day that she was cleared. She does routinely see a pediatric endocrinologist every six months, but, so far, everything has been perfect. She has thankfully not had any pancreatitis episodes. She will always be at risk for developing Type 1 Diabetes, but her pancreas has functioned almost perfectly since her distal pancreatectomy. We see her endocrinologist every six months and we are prepared to cross that bridge if we ever need to.
Zoey is a happy and healthy 8-year-old little girl who will be starting 3 rd grade in August. She recently tried out for, and made, a travel soccer team, so she is able to continue to do all of the things that she loves. It took her about six months post-surgery to get back on her bike, but she did it, and riding her bike is one of her favorite things to do.
What’s a typical day for him/her in terms of food? What other ways has the pancreas surgery affected her life?
Zoey is able to eat completely normally. We encourage her to make healthy choices, which she does, and she drinks lots of water, but she does not have any food restrictions. Her A1C is checked every six months and we have a glucose monitor in case we notice anything abnormal at home, but we are two years post-surgery at this point, and everything has been perfect. She does have a substantial scar on her belly from her surgery, which has, unfortunately, led to a keloid scar that she is very self-conscious of, but we continue to count our blessings that is the only significant side effect that she has had so far.
Any illness will take a toll on you mentally and physically. What would you tell patients and other caregivers?
My best piece of advice is to find a community to help support you through the things that have happened. We did not know anyone else who had pancreatic problems up until Zoey attended Camp Hope in July of 2022. We have no idea exactly what the future will hold for Zoey, and if her pancreas will continue to function normally over time, but we have found a community of people who also deal with these same kinds of things and that has helped us to feel like we are not alone in all of this. After feeling like we were alone in all of this for almost two years, I can’t begin to describe how thankful I am to have met so many wonderful and supportive people.
For you personally, what has helped you the most during this?
I have personally dealt with a significant amount of anxiety since Zoey’s accident. We came so close to losing our child when all she was doing was riding her bike. Pancreatic surgery is extremely risky, and I thank God everyday that we got as lucky as we did with all of this. I had to reach out to my own doctor after Zoey’s surgery because I was unable to sleep, and I was dealing with a significant amount of anxiety. I would worry about all of the what-ifs and all of the things that could potentially go wrong moving forward. I can’t begin to describe the feeling of helplessness that I felt the day of Zoey’s surgery and I would find myself stuck in that feeling.
Even now, two years later, while I’m typing up Zoey’s story, I am pulled right back into that sense of fear and panic. I have learned how to deal with all of it by relying on the people in our lives. The doctors that Zoey sees are incredibly important. As a parent, you have to feel comfortable enough to be able to reach out to your child’s doctors with any questions you might have, no matter how silly they may seem to you. My husband has been my rock through all of this. We were able to lean on each other when either one of us had a day when it became too much. We did not know if Zoey would have complications after her surgery and we feel that we are incredibly blessed that she hasn’t had any so far. I am also lucky enough to be able to rely on my cousin, who I reached out to the day of Zoey’s accident. She is ironically a pediatric endocrinologist herself, but she lives in Massachusetts, and we live in Pennsylvania, so Zoey is not able to routinely see her. We have an amazing endocrinologist here, but it is so helpful to have a close family member who specializes in the exact field that we need. You also have to be able to lean on your family and friends throughout traumatic events like we experienced. I had an amazing friend who took our younger son for us while Zoey was in the hospital, and she took care of him while Zoey was in the hospital. It took such a burden off of my mind to know that I had friends and family that I could count on to take care of our son while we focused on Zoey. There are countless other people who reached out to us and helped us in so many other ways after Zoey’s accident and they are what helped us through it all. We are so thankful for all of our amazing family and friends who we have been able to count on throughout all of this.
What did Zoey think of Camp Hope?
Zoey absolutely loved Camp Hope. It was such a great experience for her. She has never met anyone else who has pancreatic issues and now she has a whole community of people that feel like family. She was able to experience camp just like any other child and we are so thankful for that. This was Zoey’s very first time at camp and we could not have asked for a better experience for her.
How did you and your family learn about the National Pancreas Foundation?
We did not know anyone who had this type of issue after Zoey’s surgery. I went online to find as much information as I could about everything related to the pancreas, and I found the National Pancreas Foundation’s website. It was one of the best things I ever did because I feel that we have an incredible support group now that extends across the country. It was amazing to meet so many new people who are dealing with similar situations.
