So, my first post ‘The Beginning’ left off somewhere back in May 2012 when we still knew very little about Atticus’ condition and what the course of treatment was going to be. It is now over a year later, and from now on I will be writing regularly, but I wanted to fill you in on what has transpired between him leaving St. Louis Children’s Hospital and now (August 2013).
So, to throw another wrench into the situation, Brian had a job offer in Charlotte, NC, but without knowing what Atticus’ condition was, and how long he would be in the hospital, that whole thing was up in the air until Atticus got discharged from the NICU. Once we realized that Atticus could eat and breathe on his own, we felt much more comfortable making a move to a whole new state, in a whole new area that we were not familiar with, and an area where we had no family or friends there. “Comfortable??” you ask? Well, this would not be the first time that we picked up and moved to a whole new part of the country without knowing anyone. We had moved from Binghamton, NY to Champaign, IL about two years before Atticus was born. We knew no one in the Midwest, but we met some great people there and had access to amazing doctors via Barnes-Jewish Hospital in St. Louis, MO (about 3 hours from Champaign, IL).
Actually, instead of telling you what happened after Atticus was born, I am going to back up a bit to December of 2011. I was 4 months pregnant and had no idea that there were any issues with Atticus. Everything in my 12 week and 18 week ultrasounds looked perfectly normal. I remember still having this nagging feeling though that something wasn’t right. I remember saying to people, “I just can’t wait until he’s born so I know that everything is OK.” I just chalked it up to first-time pregnancy jitters. I felt so much pressure to do everything right. I stressed over everything that I ate and became obsessed with washing everything (even bananas) before I ate them. I just wanted to do everything right for this little guy. After all, I had dreamed of being a mother for so long, and it was finally happening!
I was working at University of Illinois in Urbana, IL and, although towards the end of my time there I became close to some people and made long-lasting friends, I really struggled at first to find people that I clicked with. I felt alone a lot. I felt depressed at times. When I finally became pregnant though, I was over the moon, and now I was mainly just focused on the baby’s health.
Anyway, one day in December 2011, I went to use the restroom at my work place. I started talking to Amy, who also worked in the School of Social Work but in a different office. She had just had a baby not too long ago and I felt that we would have a lot in common. I forget who asked who, but we ended up having lunch together and we clicked right away. She told me about this placed called ‘Little Wonders’ about an hour away from Champaign that does 3-D ultrasound images of your baby (just for fun, not a medical facility). I didn’t even know places like that existed so I was really excited to get this done. I called soon after and scheduled my appointment for March 17th, 2012 (you got the best pictures if you waited until around 30-35 weeks pregnant).
When March 17th came, something just didn’t feel right to me. I was nervous going to get the 3-D ultrasound. I already had 2 ultrasounds by my doctor and both looked normal, so I didn’t know why I was nervous. I thought that maybe it was just nervous excitement about seeing the baby for the first time.
Brian and I got to Little Wonders that afternoon and we were taken to the ultrasound room. The technician put the cold stuff on my stomach and started to do her thing. The whole thing was projected onto a large screen so you could see the images very big. The first moment that his face came on the screen I knew something was wrong. Because this was just sort of a ‘for fun’ thing to do, these technicians were not medical professionals – there was no doctor on site to answer questions. I remember saying to the technician, “Why does his chin look so large?” (Because ultrasounds are not in color, I couldn’t tell that the large protrusion was a tongue – it sort of looked like a really large chin). The technician tried to skirt around my questions and just said it’s probably just from him moving around a lot and the picture is blurred. She could not make any guesses or comment on something like this – she was not a medical professional. We had paid for a one hour session. So we had to sit there and wonder if there was something really wrong or was it just movement like the technician said? I knew there was something wrong but I tried to tell myself that maybe this is just what ultrasounds look like.
We left with pictures and a video of the hour long session. I spent the next few days Googling whether other people’s ultrasound pictures made it look like their babies had a massive chin or some other distortion. I couldn’t bring myself to watch the video (I still never have) or look at all of the pictures. There were a few pictures where Atticus’ arms were covering the lower portion of his face. I sent those out to our families.
A few days later I received a call from my obgyn’s office asking if I had the phone number to Little Wonders. Apparently the receptionist called me by accident. I couldn’t understand why they were calling me for Little Wonder’s phone number. “Yes, I was there, but why are you calling me for their phone number?” The receptionist stumbled and said “Never mind, I called you by accident” and wanted to get off the phone. I said “No, there must be a reason why you are calling me, is something wrong?” (I knew there was). I went into panic mode and can’t remember much after that besides leaving work and going home to Brian. We decided to just go to the obgyn’s office and demand some answers. We got there and we were told that Little Wonders had sent over some ultrasound pictures from our session and they were reviewing them now. My fears were confirmed. There was something wrong.
We went in to see the doctor and she said there was a mass in the jaw area. My heart sank. I was right. But, what exactly did this mean? Was it a tumor? I was so confused. After that, we went to Maternal Fetal Medicine in Champaign and they did another ultrasound. They said the mass was his tongue and the most likely scenario was that Atticus has Beckwith-Wiedemann Syndrome (BWS). Much discussion ensued and I remember the doctor shaking Brian’s hand as we left the ultrasound room and saying “I’m sorry.”
We met with a geneticist. She gave us a list of about 15 additional genetic or chromosomal disorders that Atticus might have. I had never heard of most of them. I refused to look anything up on the internet. Brian did some research on BWS but I was too scared. I felt that if I looked up everything it would be too overwhelming and I was afraid of what I would find out.
At that time, we didn’t know what the quality of Atticus’ life would be, but we coped with those 2 months of not knowing by telling each other that no matter what is wrong, we will love Atticus and do whatever we can to make his life good. We would have to be strong and deal with whatever lied ahead.
In the weeks following, we met with specialists at Barnes-Jewish Hospital in St. Louis. I would have to have a planned EXIT procedure. Not many hospitals do these procedures and our local hospital did not, so we would have to travel to St. Louis to have Atticus.
One morning in April, I had a fetal MRI in St. Louis which took really detailed images of Atticus. That afternoon, we were brought to a large conference room at Barnes where an Ear, Nose, and Throat (ENT) surgeon had projected the images of Atticus on a large screen and was reviewing them. The good news was that all of Atticus’ other organs looked fine. There was no evidence of anything else wrong with our baby. The ENT confirmed that the mass was his tongue (there was a time when some doctors thought it was a tumor). The ENT had a good feeling that it was a lymphatic malformation and not a genetic disorder based on the fact that nothing else was wrong. I had never heard of this. I remember the ENT saying the words “lifelong condition” and “no cure”. That meeting started off rocky, but got better. The doctor said it is “manageable”, that Atticus would need surgeries and possibly a tracheostomy throughout childhood, but that if this is what he had, he would not have any mental or cognitive disabilities. That was a huge relief.
I remember asking the ENT if we would be at an increased risk of future babies also having lymphatic malformation. He said, “No, but even if you were, no reasonable parents would let that stop them from having more children.” I took comfort in those words. It made me feel that whatever this lymphatic malformation would bring, it would not be that bad, especially compared to what some parents go through.
When I looked back at everything that had happened, I remembered that time that I bumped into Amy in the restroom at work. We went out to lunch and she told me about Little Wonders. Had I not used the restroom at that exact time, I might never have had that conversation with Amy and might never have gotten the 3-D images that showed the enlarge tongue and airway obstruction. I would have gone on thinking that everything was normal and proceeded with a normal delivery. Who knows what would have happened then…
We got lucky. There are families out there who are not as fortunate as we have been. Some babies don’t make it or are not as fortunate as Atticus. We are grateful that, although Atticus has had to deal with a lot in his little life, things could have been so much worse. LM is manageable and will only make him stronger. Please look around you and recognize everything there is to be grateful for. Not a day goes by where I am not grateful for how our situation has turned out. I will never forget the course of events that led us to this point, and I will never stop being grateful for each and every one of those events.
*Since I got sidetracked on this post, stay tuned for another post that really will bring you more into the future instead of back in time 🙂
The Grateful Mother 
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