callie's story: part II
Towards the end of 2020, I made a mental note that in the new year I would pick up where the neurologist in Charlotte left off. I also wanted to research clinics that offered MRIs without anesthesia because it really scared me to think she would need to be sedated so young (especially if it wasn’t medically necessary).
Side note... I don’t want to scare anyone who may need anesthesia/sedation for their child – I know there are many situations where time and resources are limited where anesthesia/sedation may be the only option. My dad is an anesthesiologist, and he assured me that with today’s technology and techniques, the risks are low regarding administering anesthesia to infants and toddlers (especially for older children). For us, we had the time and ability to pursue other options and preferred a non-sedate approach because we felt that zero risk was better than any risk at all.
However.. In February 2021 the unthinkable happened. Brian’s dad had a heart attack. It was shocking and instilled a lot of fear. After he was able to come home from the hospital, we did our best to support his recovery and we all tried to stay strong through such a scary event. Junior is such a tough man, I have always admired him for his strength and determination. It took a bit, but he started doing better, and the doctors set a date for open heart surgery in May. But in April, our lives were uprooted in the most terrible way when Junior unexpectedly and suddenly passed away. It didn’t seem real then, and it still doesn’t seem real now. The impact of Junior’s passing was so intense, I stopped being able to breastfeed (I had planned to continue nursing until Callie was 18 months); the stress and grief was just too much in losing someone so important to us. It was a very hard and difficult time for all of us, especially for my mother-in-law, and Brian and Jesse.
Then, I became pregnant. We had talked about wanting children close in age and knew we were wanting to try once Callie was a year old. With the fresh grief and trauma it took us a bit longer than we had planned to start trying, but we felt pressure to start as soon as we could because it took us over a year to get pregnant with Callie. Surprisingly... Mylah girl came along very quickly.
But just as fast as she was our hope, joy, and love for the future (so lovingly named after her Papaw Junior, Mylah “June”), she was swiftly taken from us in the most terrible and traumatic way at almost seven months of pregnancy. The combination of all these major life changes and events definitely put Callie’s medical investigation on the back burner. Everything just felt so overwhelming, like we couldn’t breathe. And now we were left without answers for Mylah too.
Looking back, there were a variety of different factors involved leading up to Mylah’s death, but the only definitive medical diagnosis came from my placenta pathology. It didn’t indicate whether it was the cause of her death, but it likely contributed to it (especially with the mountains of research I’ve poured over since then). I was found to have a rare condition called chronic histiocytic intervillositis (CHI); I’m hoping to go more in depth on this condition in another post to help other Mamas looking for resources – I have learned A LOT since being diagnosed and have a lot to share.
To briefly explain, CHI is when a mother’s body has a strong immune response to the placenta (it thinks it’s a foreign entity rather than the lifeline for your baby). It causes blood clots and lesions in the placenta to the point where the placenta doesn’t work properly, and the baby can’t get nutrients causing it to be at risk for growth restriction or death. The most unfortunate thing about CHI is there is no way to know if you are at risk for CHI unless you’ve already had a negative outcome in pregnancy (and have sent your placenta off to confirm the presence of CHI). Even then, it can be hard to know how things will go the next pregnancy, and the preventative treatments are experimental because the condition is so rare and not heavily researched.
Why is this discovery of CHI in my placenta so relevant to Callie? In my mind, it made me wonder if I had CHI in Callie’s pregnancy too and that maybe she had a stroke due to a blood clot from the placenta. Unfortunately, the only way to have confirmed this diagnosis would have been to send my placenta off with Callie... which we did not do because her pregnancy, labor, and delivery were all so healthy and normal. It is not routine practice to send a placenta off for testing unless there’s a medical reason. So, the only thing we could really do going forward was to rule out other possibilities. If in the end, CHI was still a plausible explanation, it would give us additional reason to be on the CHI medical protocol the next pregnancy. And the investigation would hopefully help us to better understand what happened with Callie.
And that’s exactly how we spent 2022...seeking answers for our daughters (we know we may never find) and praying for closure and healing.
All in all, Callie and I saw 20+ providers in 2022 between us both. It was a truly exhausting, complicated, tedious path of finding people to help us, going to appointments, sharing research, following up, keeping up with our insurance/medical bills, and figuring out next steps. But ultimately it has been worth every minute. Especially Callie’s appointment with the neurologist at Vanderbilt.
Honestly, the entire saga of her neurology journey deserves a detailed post of its own because it’s one of the strongest testimonies of faith I have witnessed in a long time; I’ll try to write that soon. For now, I want to finish the summary of Callie’s story so that anyone reading this can get the full picture in a (somewhat) brief snapshot. So… pausing here to save the rest of Callie’s story and how we obtained her diagnosis in the next post (look for it on her birthday 💕).
xo Paige
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callie’s story: part iii
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callie’s story: part i