Kristin & Kayden’s Story
Hi UFR Community! My name is Kristin Lashoff and I am one of the founding members of this awesome parent network. I am a mom to three kids- Ryder (11), Lyla (8), and Kayden (4). In 2019, our third child Kayden was born with a translucent dimple on his lower back, something that was later determined to be a spinal dermal sinus tract and a suspected tethered spinal cord. My pregnancy and delivery were fairly normal with no indication that he had any abnormalities. I opted out of the early genetic testing because, well to be honest, I had already had two healthy kids and I truly didn't think twice of having an unhealthy baby. Something I later realized I significantly took for granted. It is a MIRACLE when your child enters the world healthy.
The hospital where I had him handled the situation poorly and told us that Kayden would require immediate surgery, that he would never walk and be wheelchair bound, that he would need a catheter to pee and so many other things BEFORE they knew exactly what was going on. This immediately set me off into deep postpartum anxiety, something I did not have with my older two. They took him for an ultrasound and came back into my delivery room claiming “he was fine” and to follow up with our pediatrician in 2 months. Of course we were not ok with this determination, so our pediatrician called down to St. Louis Children’s Hospital and asked for the neurosurgeon on call to come check out Kayden.
Dr. Jenn Strahle entered my room a few hours later and was a complete breath of fresh air after a couple of very traumatic hours. She reassured me it was not what they thought it initially was, but wanted to get a spinal and brain MRI done the next day. That MRI did not show his tethered cord, but did show that he had something connecting from the outer layer of skin. He was just too small at the time to really see what was going on. She suggested we wait until 6 months old to do some repeat scans and go from there. However, we were told that the DST would need to be removed and to plan for that when he was around 1 year old. It was a very long 6 months of waiting for answers.
At about 5 weeks old, Kayden began to choke on his reflux. We had struggled to find the right formula for him as he was having some bowel and reflux issues. I tried to breastfeed as I did with my other two, but it just wasn’t working with my postpartum anxiety. There was one terrifying moment where I had tried to give him some gripe water out of a syringe to hopefully help with some bowel issues he was having. As I administered that through the syringe, he choked, turned purple and wasn’t breathing. We immediately called 911 and thankfully after learning baby CPR earlier in my 20s I remembered to flip him over on my arm and started pounding on his back to get him to breathe. It was another traumatic experience in a short amount of time. Thankfully, he cleared the gripe water on his own and started breathing prior to the EMTs arriving. I was utterly shaken. We ended up seeing a Pulmonologist as he kept having these choking episodes and thankfully he had an episode in that appointment that the doctor was able to witness (how often does that happen when you bring your kids in for being sick and they magically have no fever or are better as soon as you get to the appt!). That doctor diagnosed Kayden with Laryngomalasia, an underdeveloped esophageal flange, and that he would outgrow it. This diagnosis would come into play at his pre-op testing (keep reading!) because he looked at his day old brain MRI and determined all looked fine. He would proceed to choke every day about 10 -20 times per day at its peak until about 5 months old, when he did, in fact, “outgrow it”. I will forever have PTSD from those 5 months.
We followed up with Dr. Strahle at 6 months for a sedated MRI of his spine. I had no idea how truly challenging and heart wrenching it would be to watch my baby get an IV and then wake up from sedation. It really is stressful, more so for the parent than the child, because thankfully Kayden will never remember it. That MRI confirmed the Dermal Sinus Tract, but did not show any cord tethering. Dr. Strahle still suspected that his cord was tethered and ironically that would never show on any of his MRIs.
We had scheduled for Kayden to have surgery to remove the tract at 12 months old. His birthday is April 2nd, so in March of 2020, COVID had just begun. His surgery was unfortunately delayed two months due to the pandemic and the hospital restrictions, which caused added layers of stress and worry. Finally in May 2020, we got the call that his surgery would happen in early June. He was scheduled for more pre-operative testing, which meant another round of sedation. During this set of MRIs it was discovered that he had developed a Chiari Malformation Type 1, where the brain sits a little bit lower on the spinal cord. This diagnosis was a bit of a blow as I had spent that entire year waiting for this spinal surgery thinking that we would close the door on this stressful chapter and move forward.
However, that was not what God had in store for us. The Chiari diagnosis would mean that he would live his whole life with it, where as, the DST and cord tethering were in my eyes “fixable”. It is interesting as I look back on his first year of life because we know he wasn’t born with the Chiari (per the 1 day old brain MRI), but that it had developed during that first year. The choking he had experienced may have been the start of it all as choking is a Chiari symptom. I also later learned that Chiari and Tethered Cords are suspected to go hand in hand, so it was assumed that the cord tethering may have resulted in the Chiari. Makes sense if the cord cannot move freely and is pulling everything down, right?
Kayden had major spinal surgery on June 1st, 2020 that lasted approximately 9 hours long. It was the most anxiety ridden 9 hours I had endured in life up to that point. My husband, Matt and I, spent those 9 hours together, praying, walking the beautiful St. Louis Children’s Hospital terrace Garden, holding each other and silently committing to never take one second for granted moving forward. On the flip side, I was eerily calm during all of it and I truly believe God worked his magic to give me that sense of peace. Dr. Strahle confirmed that his spinal cord was in fact tethered and the DST and the tethering were all intertwined. It is beyond a miracle that Kayden met every single developmental milestone and showed no signs of bladder/kidney complications or lower extremity issues given how extensive everything was inside his tiny little body.
While in the PICU with Kayden post surgery, I had this overwhelming feeling of wanting to help others going through this journey. I had closed myself off for the majority of his first year dealing with the anxiety only sharing with family and close friends. It was in that hospital room that I realized I could turn this rare situation we found ourselves in and do some good. I changed my private Instagram profile (@kmlashoff) to public and I started posting about Kayden using hashtags like #tetheredcord and #chiarimalformation. To my surprise, I started getting messages from people from all over the world, including Germany, Dubai, Toronto, Chicago, Kentucky, and so on asking me about our situation and wanting to connect. I deeply empathize with these people as I know exactly their feelings and the need to connect with someone who had gone through something similar before. That connection was definitely something missing for me with Kayden.
In January 2023, we were dealt another stressful hand as we learned our middle child, Lyla (8), also has a Chiari Malformation. Lyla had been experiencing headaches for 8-9 months and while headaches can be “normal”, I just had this gut feeling that I should ask Kayden’s neurosurgeon about it. I took Kayden in for his annual appts and mentioned Lyla’s headaches along with some other symptoms she had been experiencing and he suggested we just get Lyla scanned since we already had one child with Chiari, but mostly to just “rule things out”. We scheduled the MRI and met with our neurosurgeon right after. I think I knew before he even walked into that appt that he was going to tell us Lyla has it too. It’s weird how things like that happen! Since I now have two kiddos living with Chiari, I will definitely be sharing more of our journey with Lyla in future posts.
I am so excited to be part of the launch of this community because it truly symbolizes how connected we all are in some way. I hope sharing our story, along with other community members stories, helps people navigating their own journey. I have so much more to share from our experience, so stay tuned for other parts as we talk through what it’s like to stay at the hospital in the PICU with your child and the post-care journey we are now on with both kids.
I will leave you with one of my favorite quotes. Helen Keller once said “Alone we can do so little, together we can do so much.” I think as a community we CAN do so much to help spread the love and guide each and everyone of us through these RARE experiences. We might not be walking the same path, but the similarities are there and we can all learn and grow from one another.
Thank you for reading our story! Until next time :-)
Kristin