This month’s Conversations is with Shelly (read her bio here). Shelly and I met via email 14 years ago. At the time my husband and I were in the process of moving to Oklahoma. One of my concerns moving across state lines (or anywhere for that matter) was finding new doctors for my son. I mean we’re not talking about just one doctor, but several. It was one of the most stressful aspects of our move.
Thankfully our family support group for our son’s genetic disorder, CFC syndrome, had created a directory. It listed the names of all individuals with CFC and their families, separated by country and state. I was beyond thrilled to find two families (at the time) who had kids with CFC living in the state of Oklahoma.
Providential meeting
I immediately contacted Shelly. I was hoping she would have doctor recommendations since our kids probably saw some of the same specialists. Well, she went above and beyond my expectations! She gave me a comprehensive list of doctors broken down by specialty. In addition, she was also a fountain of knowledge about services for kids with disabilities in Oklahoma. This information made our move so much easier.
Our families eventually met in person after our move and we’ve become friends. We used to meet regularly with other Oklahoma CFC moms. Our number has now grown to six families who have (or had) kids with CFC living in Oklahoma.
Most recently, we’ve volunteered together at a midweek program for teenagers with special needs (before COVID-19). We’ve also tried to implement a weekend program for young adults at our local church. Unfortunately, that dream hasn’t materialized yet.
I knew I wanted to interview Shelly because she’s a working mom raising two kids with disabilities. It’s a very different normal than mine and I wanted to hear more about it.
Another cafe, another conversation
Shelly and I met at another local coffee shop where I accidentally ordered a ginormous cup of coffee. Significantly larger than the 8 ounces I normally drink. Not only did I drink enough caffeine to last the day but I’m pretty sure there was enough to last several days.
Shelly, on the other hand, had no problems ordering because she paid attention to the menu board…and the barista. I, unfortunately, paid attention to neither. Choosing instead to focus on what type of treat I should get with my coffee. I’m happy to say I got the treat right even if I got the size of the coffee wrong. Thankfully, the conversation was worth all the extra caffeine.
In the beginning
Shelly’s story starts out very uneventful. She had a typical pregnancy and a routine labor and delivery. Thus far in her story, Shelly and her husband, Coby were your average first time parents welcoming their brand new baby girl. Whom they named Kinley. At this point in time, they had no idea their story would have several plot twists.
In this chapter, everything about their little girl, pointed to a strong healthy baby. She had a strong cry and good skin tone. The first little hiccup was when Kinley was immediately whisked away from Shelly’s arms a little too quickly after she was placed there. Apparently, Kinley had aspirated.
The medical staff didn’t seem concerned which eased Shelly’s mind. Although, she had no idea where her baby went. Since this was her first baby she didn’t realize this wasn’t the norm.
They eventually brought Kinley back, only to encounter their second little hiccup. Kinley had a significant heart murmur. The only way to find the cause was to do an echocardiogram. Which uses sound waves to create an image of the heart, as well as the speed and direction of blood flow.
Kinley’s congenital heart defect
The echocardiogram showed Kinley had a ventricular septal defect (VSD). It was probably not the best news Shelly and Coby could’ve hoped for. Thankfully, although Kinley’s VSD was significant it wasn’t a critical congenital heart defect (CHD). This meant she didn’t need to have surgery right away. She could go home without an extended hospital stay.
CHD’s are one of the most common birth defects in children. This is probably why no one suspected a genetic condition.
Looking back Shelly says not having a diagnosis at this time was a blessing. Had she known there was a genetic condition, she would’ve spent a lot of time on the internet researching. Not knowing, allowed her to bring Kinley home focused only on enjoying and adjusting to life with a newborn.
Being a new mom
Shelly had been warned being a new mom was going to be hard. So when Kinley inducted Shelly into the world of motherhood with a bang. Shelly assumed the difficulties she was experiencing was what everyone was referencing. But it wasn’t.
Kinley’s baby years were rough and it had nothing to do with Shelly being a new mom. First, Kinley had sleeping problems. She couldn’t seem to fall into a long restful sleep, she was getting up all the time. This meant Shelly wasn’t getting much sleep either. Secondly, Kinley was a weak sucker which made nursing difficult. On top of which, she was also prone to projectile vomiting after feedings.
Naturally, Shelly believed these issues were related to Kinley’s heart condition. In hindsight, she realizes Kinley’s problems were a result of gastrointestinal (GI) dysmotility rather than her CHD. Back then however, there was no reason to suspect GI issues.
The first plot twist
The first plot twist occurs when Kinley was around 7-8 months old. It started with a routine visit to the pediatrician who expressed concerns about Kinley’s development. Specifically the fact she wasn’t holding her head as high as she should be at her age. This initiated a round of developmental assessments. Much to Shelly and Coby’s surprise, Kinley was developmentally delayed.
This diagnosis qualified her to receive services under the early intervention program of Oklahoma, SoonerStart. It was becoming clear there was more to Kinley’s delays beyond just a heart condition. There was reason to believe she may have an underlying genetic condition. The only way to know for sure was to take Kinley to a geneticist for an evaluation.
But Shelly and Coby decided to hold off on the geneticist until after heart surgery. After all, Kinley was already receiving all the services she needed. Getting an official diagnosis wasn’t going to change her current treatment plan.
Kinley was 10 months old when she underwent open-heart surgery. The doctors made three repairs. They corrected her VSD, pulmonary stenosis, and subaortic membrane. Even writing that sentence was scary. I can’t imagine what a terrifying time it must have been for Shelly and Coby as their baby underwent that surgery. Thankfully, the surgery was successful and Kinley recovered beautifully.
Now with heart surgery behind them, Shelly and Coby could turn their attention to finding a diagnosis for their daughter. But there was another pleasant plot twist to their story. In about 8 months there would be a new addition to the family because Shelly was pregnant.