October 28th started off as a normal enough day. It was a Tuesday, and my last day at my job was that Thursday. I was frantic to wrap up loose ends before switching jobs the end of the week. I was on my way to meet with a financial planner to go over retirement funds since I was leaving my current employer-real adult stuff, that I didn't quite understand. As I was about to walk into my appointment, my phone rang. It was my doctor's office, and I was caught off guard. Typically they called the day before an appointment to remind me of it the following day, but my next appointment wasn't for a week and a half. I then thought "oh they are probably calling to tell me everything was ok on my sonogram from last Friday." Without a second thought, I silenced the call anticipating them to leave a voice mail saying everything was fine, and they would see me the following week. I went into my appointment, which took all of five minutes. Apparently when you don't have hardly any money invested, there's not much to discuss! I left my meeting and nonchalantly checked my voice mail, anticipating the nurse's voice on the other end. It wasn't; it was my doctor and she didn't sound like her usual self. She gave me her direct number, and told me to call her back ASAP. That was it. I knew instantly something was wrong from my sonogram Friday. My heart started racing and I tried to keep my hand still long enough to dial her back. She answered the first ring, without a hello, just by saying my name."Marcella!" She was sitting there anticipating my reply. She quickly told me there were many abnormalities found on our sonogram. The radiologist knew immediately upon reading it four days prior, and called Dr Agustin (my OB) and told her his initial diagnosis: dwarfism. What they didn't know from my initial ultrasound however, was if it was a fatal form. My doctor proceeded to tell me she had an appointment set up for me with a maternal fetal specialist and a level II sonogram that day. This would hopefully give them more information about whether it was lethal. She gave me all this information very professionally, but very kindly. I asked her how certain they could be off of a few measurements. She replied "you are almost 21 weeks...and your baby's limbs are all measuring at 13-14 weeks." Well I'm no OB or radiologist, but I knew this was not a normal variance, not just a lag in his development. She wrapped our conversation up with a simple "I'm sorry" and that was it. I was standing outside CTICU, and conveniently, there was a crash cart there, which I promptly collapsed on. Cries I didn't know I was capable of making escaped me, and I prayed for a few minutes of solitude; thankfully nobody came looking to see what rabid animal was loose in the hospital, but that's certainly what I sounded like. It finally dawned on me that I had to tell Mike. How did I give him this news? I called him at work, but wasn't able to form words. He thought my cries were laughs, and he started laughing, wondering what I was cracking up about. He quickly figured out that wasn't the case. I managed to sputter out a sentence fragment...OB called...things abnormal...he has dwarfism. Not a question, but a statement. I knew my doctor wouldn't give me that diagnosis over the phone if she weren't sure. Mike was done for the morning and agreed to leave and meet me at home. I called my friend and coworker Jane, who had referred me to Dr Agustin. She could tell immediately I was upset. She came down to meet me by a back stairwell where I gave her all the news I knew. She helped divide my patients and tell my doctors I would be leaving for the day. Less than a month before, I had cried in the same corner as I learned my dog had died. Now I was just told my baby might too? I didn't like the pattern and decided to bail, as if the location would change the circumstances.
I made it to my car before realizing I had no clue what was actually going to happen at my appointment this afternoon. Was it just a sonogram? Would I be meeting this specialist? Dr Agustin said I would be seeing a Dr Farley. I had never heard of him, and now suddenly this stranger felt like he held my entire future. I called Dr Agustin's nurse back, who explained I was just going for a sonogram today. She tried to reassure me by stating his brain and other organs appeared normal thus far. But I wouldn't meet this Dr Farley until November 11th. What the hell? How was I supposed to function for another two weeks before this appointment!? Mike and I got home at the same time; I promptly bawled some more, where Mike went into problem-solving mode. He quickly started looking up prenatal diagnosis of dwarfism...what he found was less than reassuring. Many forms found prenatally were in fact lethal, due to underdevelopment of the chest, and therefore heart and lungs. How could this be? Our sonogram from just four days before looked like any other sonogram I had seen. I had shown the picture to my mother in law just the night before and said "I'm sure he looks just like every other baby does right now." Little did I know how far from the truth that statement was. Hours dragged on, and we eventually found our way to our ultrasound appointment. The tech brought us back, and asked what we knew about why we were there. We told her the vague diagnosis "skeletal dysplasia." She nodded in agreement, and proceeded to spend the next 90 minutes getting very exact measurements: head size, cardiac circumference, abdominal circumference, long bone lengths, ratios of heart to chest, abdomen to chest, femur to abdomen...the measurements felt endless. She did the best she could to lighten the mood and show us some profile pictures, get some action shots of his movements. I could see his heart beating, and his legs kicking. How could that not be positive? At the end of our appointment, she informed us she did not routinely have to check many of these measurements, and she wanted another ultrasound tech to look over everything before we left. At the same time, I checked my phone and saw that I had missed a call and checked my voice mail. It was Dr Farley's nurse, Mari. She had been in touch with Dr Agustin, and had many questions for me. The ultrasound tech let me use her desk to call Mari back, while she had a co worker double check her study. While I waited for her to answer, I glanced down at the schedule. There was one line crossed out where someone had cancelled, and my name was penciled in. Marcella Stanley- Dwarfism. The lack of punctuation was not lost on me. Again, not a question, but a statement. How could just a few short hours change, and now permanently associate this diagnosis to us? Mari eventually answered, and she quickly went into what my "skeletal dysplasia" workup would entail. I could have an amniocentesis, I needed genetic testing which I had declined up to this point, I needed to get lab drawn to check viral serologies as I could have contacted an illness earlier in my pregnancy that I had not known of. Blah, blah, blah. And she gave me the last option, if I wanted to decline all this: termination. But in the state of Kansas, this can't be done past 22 weeks, and I would be 21 the next day. So if I chose this, we would need to schedule it quickly. Um, hard no. I did my best to politely tell her that I had all of 5 hours to process this information, but I was not interested in "termination." What a ridiculous PC term. Why can't we call it what it is? Abortion is abortion, regardless of the circumstance. Plus, my current insurance, provided by a Catholic institution, would not cover ANY genetic testing, as this is apparently associated with higher rates of termination. I wouldn't have my new insurance for almost a week, and couldn't get my genetic tests done until then. I declined everything else at that point and went home. We were told not to expect any news for another 2-3 days at least.
We sat the next few hours, not sure how to pass the time. Somehow, it was 9pm. Mike was watching the World Series, I was mostly staring at the wall trying to maintain some form of composure. My phone rang, and it was the main number for Wesley. I didn't even have privileges there right now, what were they calling me for? I answered, and was shocked that it was Dr Agustin on the other end, and she had gone through the operator to get my number at home. She informed me that Dr Farley had already read my ultrasound that evening. He felt very confident it was not a lethal form of dwarfism, and called Dr Agustin to fill her in. She, thankfully, went the extra step to call me after hours to give me this news. She was very reassured based off his initial report. Despite this, I was still offered the alternative: termination. We again declined, and she stated she would see us at our next visit in 10 days. I was flooded with relief, but still filled with questions. We were so thankful it didn't look lethal, but that didn't necessary narrow our diagnosis down. From our initial research, we saw there are over 200 forms of dwarfism! The most common form being achondroplasia, and if born to average height parents, is just a total fluke. Only one in 25,000-40,000 babies are born with this we discovered. I fiercely fought against the urge to think "why him, why us?" and tried to focus on the positive news we had received. For those who don't know me as well, I have always loved shows about little people. To the point of obsession that it became a joke in my family. When in doubt, Marcella's watching Little People Big World or the Little Couple. So needless to say, I did not care that our son had dwarfism. I didn't even doubt it. Mike and I, maybe even too quickly, immediately accepted this diagnosis. Denial wouldn't change anything; not accepting it wouldn't make his limbs suddenly catch up to where they should be. Despite my years of "research" er, reality TV watching, I felt so overwhelmed. I didn't know how to take care of an average baby, let alone one with special needs! I had never changed a diaper! I had just gone to work on my registry the weekend before and left feeling defeated. I didn't know what half this crap was, and my baby was supposed to need it? Now I felt that I knew even less to expect. Mike on the other hand, as usual, took the more positive approach. He told me "you have always loved little people and learning about them. You just didn't realize God was preparing you all along to be Brody's mom."
And with one phone call, our entire lives had changed. And Brody's big adventure began. Welcome to our journey!
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