‘Oh, honey.’ She noticed a cleft lip and clubbed feet. ‘This is going to be hard.’ I LOST it. My body began to give up.’: Woman births daughter with CHARGE syndrome, ‘She’s kept me going’

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“My mom always said, ‘There’s healing in advocacy,’ and I really get that now. I’m not sure what healing looks like, or where I will go from here, but one thing is for sure: my daughter, Sloan, is a queen, and she has kept me moving forward on my darkest days. And I’ve had some dark days.

In April of 2019, Sloan joined the world in a big, traumatic, unexpected way. In September of 2019, my mom, my lifelong best friend and mentor, passed away unexpectedly in her sleep. And in June of 2020, my inseparable partner of 13 years, amazing husband, and dedicated father to Sloan passed away after facing mental illness. I’m currently a giant human ball of endless grief, too much adulting, survival mode, trauma, dark humor, ice cream, and lots of Netflix marathons. But instead of diving into the messiness of my mind and all the stories, let’s just talk about Sloan’s entrance into this world.

Courtesy of Kari Harbath

Aaron (my husband) and I planned for years in preparation for Sloan. 12 years to be exact. We kept a ‘baby box’ several years before Sloan’s birth, where my mom, Aaron, and I would gather little treats for our future little Aaron-Kari human. And, in a way-too-obsessive way, I focused on my health and started taking prenatal vitamins an entire year before becoming pregnant with Sloan. We thought we had it all made and everything in our life was going exactly as planned. In August of 2018 we found out I was pregnant, and it was thrilling news for our family. My pregnancy started out pretty typical—except for some horrific all-day sickness where Aaron kindly held my hair and cleaned up way too much puke (sorry, Aaron). But beyond that, we were golden.

Courtesy of Kari Harbath

We had full control and our plan was in motion. And, as we all know, everything is always within our control and only ever goes according to plan…right? December 2019 rolled around and we were ready for our 20-week ultrasound. It was a major event. My wonderful family took the day off from work and looked like a parade walking into the tiny ultrasound room. Sloan’s grandma, Kim, and grandpa, Paul, sat nearby while grandpa had his camera ready to go—tripod and all. There were lots of smiles, giggles, and sniffles. Then the energy changed about halfway through.

The ultrasound tech became softer, noting something was unusual on Sloan’s ultrasound. She had noticed Sloan’s cleft lip and club feet. I’ll never forget the immediate shock I felt while trying to hold it all together for my mom, dad, and husband. It was in this (slightly inconvenient) moment the nurse decided to take my blood pressure. Once the nurse said, ‘Oh honey, your blood pressure is skyrocketing,’ I lost it. Luckily, Aaron stepped out of the room to hug me, and we just stood there together in silence for a bit. As Aaron was hugging me, my OBGYN walked up, gave me a side hug, and told me, ‘You two aren’t sh*t heads. This is really hard news. But you have planned, and you can do this.’ And, oddly enough, it was exactly what I needed to hear in the moment.

Courtesy of Kari Harbath

After that 20-week ultrasound, everything changed. Aaron, my mom, and I attended weekly detailed ultrasounds to keep an eye on Sloan. Aaron and I decided to have an amniocentesis done to better plan for and understand Sloan’s diagnosis. The amnio came back without any genetic markers of a syndrome, and over time doctors felt more confident there was a chance Sloan just happened to have a cleft lip and club feet. Nothing more. It was rare, but not unheard of. ‘Rare, but not unheard of’ became my life story from that point forward.

Courtesy of Kari Harbath

At the end of March 2019, Sloan’s growth began to slow while my body began to show signs of giving up. Nothing was concerning to the point of delivery yet, but I was put on bed rest and monitored closely for two weeks. On April 8th of 2019, we were immediately admitted to the labor and delivery unit as my body was beginning to fight carrying Sloan, and Sloan’s heart was giving up. While closely monitored, I spent the night in the hospital and my OBGYN decided it was time for an emergency C-section on April 9. The doctors couldn’t get me numb fast enough, so they put me under stronger pain relief and sedatives, and I don’t remember much after that. The only thing I do remember was sensing Aaron’s concern for me and Sloan. While my memory is hazy, from what Aaron told me—they swiftly took Sloan into another room once she was born.

Sloan wasn’t breathing upon birth. The room was silent, doctors worked quickly, and—with tears streaming down his face—Aaron made sure to take (pretty jarring) pictures of every moment. All he could remember saying to whoever would listen was, ‘I promised Kari I would take pictures no matter what. I promised.’ And that statement from Aaron quickly became one of our many dark jokes after the trauma of this experience. After the fifth intubation attempt, they were successful. Aaron always recalled how the room went from a chilling silence to the medical staff suddenly talking about their weekend plans. A nurse pulled Aaron closer to hold Sloan’s hand, he finally put down the camera, and in that moment, he was able to touch Sloan for the very first time.

Courtesy of Kari Harbath

Within minutes, the team at our local hospital quickly realized they didn’t have enough support for Sloan, and she needed life flight transport to our state’s level four NICU in Salt Lake City. Once she was stable enough for transport, she took off on her first helicopter ride. My husband and dad went to see her, while my mom stayed with me. In the days that followed, I FaceTimed my husband to see Sloan while I worked hard to get moving again. I had many wonderful visitors—but my favorite was the anesthesiologist coming back to visit me, tears in his eyes, with a card for Aaron and a stuffed animal for Sloan. The anesthesiologist wrote a note about how he admired the love and care Aaron had for me and Sloan—and how he didn’t witness such an intense love like that often. The anesthesiologist commended Aaron for his strength, dedication, and kindness, and said I was lucky to have him by my side through such a traumatic, intense delivery. I agreed and still look at that card often.

Courtesy of Kari Harbath

2 days later, I was out of the hospital and down to the NICU with Aaron to visit Sloan. Sloan was at the NICU for 2 months. 2 scary, beautiful, life-altering months with countless memories and stories. Among all of those memories and stories, Sloan received a long list of medical diagnoses: including profound Deafblindness. At the time, this was devastating news for our family. And today, it’s just a part of Sloan. While there is grief around wanting Sloan to easily access the world around her, devastating isn’t a word I’d use for her diagnosis now. I know better and my perspective is changed because Sloan’s quality of life and tenacious attitude is something I wish for everyone. 6 months after Sloan’s birth, Sloan received a clinical diagnosis of CHARGE syndrome due to the structure of her eyes. We’re proud to now be a part of the CHARGE family, and cherish our friends in that community.

Courtesy of Kari Harbath

Now, tonight, I am sitting in bed watching Sloan roll across my floor looking for the next wall or door to run into because she thinks it’s funny. I spent most of the day chasing her around and signing ‘no’ into her hand because she wants to take every risk possible. She’s fearless, smart, sneaky, and wild, and she has an entire crew of people who have helped us get here. Sloan currently has a physical therapist, occupational therapist, speech therapist, deaf specialist, blind specialist, early intervention, Deafblind specialist, and nurse. And those are just her in-home medical professionals. She also has a huge medical team of specialists, nurses, doctors, and surgeons who have supported Sloan with lots of science and love. She averages 18.5 appointments a month and she’s a bit of a legend for that reason, among many others.

Courtesy of Kari Harbath

People often say Sloan is inspirational, sweet, angelic, special, etc. But to me, sweet and angelic don’t exactly describe Sloan. She’s so much more than the generic label we put on children with disabilities. Sloan is one heck of a human. She’s a human who has had to face unbelievable challenges and does it with a couldn’t-give-two-sh*ts vibe. She strives to learn, grow, and has done incredible things with the rarest diagnoses and medical complexities. I love her dearly and want to give her every opportunity and chance to succeed in life. And so far, she’s kicking more butt than we ever thought possible.

Courtesy of Kari Harbath

Since Sloan’s wild birth, NICU stay, and life at home, our life has completely uprooted in really difficult ways. My mom unexpectedly died in September of 2019, and my husband (Aaron) died in June of 2020. They were my best friends, mentors, cheerleaders, and the ultimate advocates for Sloan. I will always love them, and they’ll have a large piece of my heart. If you started reading this article curious as to why my life entails a lot of grief, ice cream, and Netflix marathons, I hope it all makes sense now. Although life has changed in difficult ways, our wild, rare, Sloan has kept me going. Especially on the worst days of my life. Sloan, if you’re reading this, thank you. Thank you for sitting with me in my darkest hours, helping me continue to avoid the label of ‘sh*t head,’ and teaching me more than I’ll ever teach you.”

Heather Palmer Photography

This story was submitted to Love What Matters by Kari Harbath from Ogden, Utah. You can follow her journey on her Instagram and her blog. Submit your own story here and sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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