Help McKaiden with her MALS Surgery

Dear Family & Friends,

A date has been set for McKaiden's MALS surgery, it will be January 25th. Due to the specialized surgery, it requires them to travel to Connecticut for 3 weeks for the procedure and recovery. Let's help them out so they can focus on getting McKaiden to begin life 2.0 (life after MALS).

Here is the journey McKaiden has been on so far written by her mom:

This post takes me completely out of my comfort zone because I am not great with medical stuff. I’m a self-proclaimed terrible mom when my kids are sick. I don’t have much patience and I just want them to get better so we can get back to life. But, God has a way of teaching us the lessons that he knows we need and I have been greatly humbled by McKaiden’s experiences with her health over the last year. We are celebrating a medical diagnosis of something called MALS (Median Arcuate Ligament Syndrome)for Kaid after 12 looong and painful months solely because of a post made by a friend-of-a-friend on FB. I will forever be grateful for that post because the doctors had basically given up looking for a reason for Kaid’s severe nausea and extreme stomach pain after eating. Someone’s brave post helped us and we hope that by sharing Kaid’s story, maybe we can help someone too. So, here goes! After suffering all throughout her childhood with lots of stomach issues that we kind of wrote off as normal kid stuff, Kaid suddenly lost 15 pounds in the span of 2 weeks last November. She could not eat anything due to feeling so nauseous and when we did get her to eat a few bites, she claimed it felt as if she was being stabbed in the stomach. We got a referral to a pediatric GI doctor who did 8 tests over the next 10 months. Every test came back normal. She also tried 5 different medications. None of them did anything for her symptoms and some had really bad side affects. At this point, her doctor at the University of Iowa told me that we should feel happy to know that nothing “serious” was wrong and that we should feel comforted to know that nausea and stomach pains are a “normal teenage girl issue.” I told them that I was a teenage girl at one point and I never had any of these issues, nor did my sister, or any of my teenage girlfriends, or any of Kaid’s teenage girlfriends. I had to suggest testing for MALS to her doctors and even then they did not really want to. They reluctantly did the test and it showed the presence of MALS. Kaid was thrilled to know that we had maybe found an answer to her pain. They said they needed to do another test to confirm this because MALS is so rare. So, we went back to Iowa City for another test which they said did not confirm MALS. When I asked her doctor to explain this to me, I was told that they don’t have much information on MALS because it’s so rare, there is lots of debate on how to diagnose it, and how to test for it. But, according to the University of Iowa hospitals, she didn’t have anything and if we wanted to know more, we’d have to seek out a specialist but they wouldn’t expect us to do that because that’s for kids that are “really sick.” They sent us on our way with a suggestion to try some more medicine. At this point I had become a part-time medical researcher and I reached out to the friend-of-friend who had originally posted about her daughter’s experience with MALS. Her daughter’s experience had so many similarities to Kaid’s and I just knew in my heart that we needed to pursue more answers for Kaid so she could get back to living a normal life. So, in August I started the long process of collecting all of Kaid’s medical records, testing results, and testing images to send to Dr. Hsu who was a MALS specialist based in Connecticut. He reviewed all her testing and then we were able to connect via teleconference in October. Dr. Hsu told us that Kaid had the anatomy for MALS, meaning that she has a ligament that sits too low on her diaphragm. She was either born that way or suffered some sort of trauma that may have caused it. Either way, this caused a compression each time she tried to eat and over years and years of this happening, inflamed the nerves of her stomach. Dr. Hsu recommended a Celiac Plexus block which is where they would go through her back with 2 needles and numb her stomach nerves. If this worked than it would confirm the diagnosis of MALS and he would schedule her for surgery. This was amazing news but getting the block done was a challenge. We planned to go to Connecticut to get it done but our insurance denied out of network services so we had to find someone in our network to do to. After being denied by 2 doctors who wouldn’t do it on a pediatric patient, we finally found a doctor back at the U of I who agreed to do the block for us. We were nervous because these were the people who had sent us on our way and told us nothing was wrong. But, we put our trust in them and had an awesome experience. In November Kaid had the block done, and for 13 hours, she could eat with no nausea or pain! It was amazing to watch her. She was a completely different kid. She had tons of energy, asked to go shopping, went to her sister’s basketball game, and sat upstairs planning Xmas gifts with her siblings all night. These things might seem small, but it’s all Kaid could do to get through her normal daily activities for school and sports before she just came home and went to bed. The block gave us a snapshot of who she really is as a person. She was bummed when it wore off, but we were excited to share the results with Dr. Hsu at her next appointment. He confirmed the diagnosis for MALS and put us on the list to schedule surgery. We are 7th on the list and should hopefully get a date for surgery in the next few weeks. They are estimating February. During surgery he will release the ligament and then cut back her stomach nerves. This should, hopefully, give her the relief she needs! We have had to switch insurance policies in order to have Dr. Hsu as one of our in network providers, will have to be in Connecticut for 3 weeks for surgery and recovery, and will undoubtedly face challenges as she heals, but we are extremely excited and hopeful for McKaiden’s life 2.0 (this is what MALS patients call their life after surgery!) This if officially my longest FB post to date, but we truly hope that Kaid’s story can help someone else. This experience has opened our eyes to what is truly important in life and the many ways that people are suffering silently on a daily basis. We are sending thoughts and prayers to whoever might need them right now!