Atticus’ Business Cards

I guess I am so used to Atticus’ tongue and lip that I don’t even notice it anymore.  It’s becoming more apparent though, that others are unsure of what exactly is going on.  It’s pretty obvious upon interacting with Atticus that there is nothing ‘wrong’ with him, so people tend to be confused as to what is going on in his mouth region.  We’ve gotten some interesting questions from people.  It’s actually pretty interesting to see people’s reactions.  Kids tend to stare, but not in a mean way, just in a curious way.  Adults either don’t say anything, or sometimes they’ll ask questions, not always in the most tactful of ways.

One day we were sitting in the hospital waiting room before Atticus’ last pe-operation assessment appointment and some guy looked at Atticus and asked, “What happened to him?”  Not the most tactful way to ask, but you have to give the guy a little credit for wanting to know.  We explained that he was born with an enlarged tongue and lip.  He asked, “Can’t they just fix it with surgery?”  Well, yes, sort of, but it’s not that easy.  You have to remember that a tongue does so many things.  It allows us to speak and eat, among other things and there’s no such thing as a tongue transplant.  So, with Atticus’ enlarged tongue, doctors have to tread lightly with how much they remove.  What if they remove too much, or damage nerves and the tongue becomes paralyzed and Atticus can’t eat or speak on his own?  These are things that doctors need to consider.  So, no, it is not so simple as just ‘fix it surgically’.

I sometimes struggle with how much information to give people.  When they ask, I usually say he was born with an enlarged tongue and leave it up to them to ask if they want more information.  The other day, I was ordering deli meat and the deli clerk who was waiting on me smiled at Atticus.  Of course, Atticus gave a huge smile back.  The deli clerk looked a little confused, and took a closer look. “Is that a piece of candy in her mouth?”, he asked.  Well, first off, Atticus is a boy (haha) and secondly, no, it is not a piece of candy.  I politely explained that it is his tongue and he was born this way.  “Oh dear,” the deli clerk responded.  I really couldn’t assess whether he wanted any more information, so I just smiled and added, “but he is fine”, and went on my way.

This encounter with the deli clerk got me thinking though.  Maybe I am obligated, as a parent of a child with a rare anomaly, to educate others and increase awareness.  Maybe someday people will see a child or adult with an enlarged tongue, or enlarged cheek, or mass in their neck, and maybe they’ll still be curious, but once you say the words ‘lymphatic malformation’ the person will say, “Oh, I’ve heard of those!  They can be tough to treat, but you are just the same as me…you just have a bigger tongue (or cheek, or neck, etc)”.  As of this date, any time I’ve said the words ‘lymphatic malformation’ I have never been told, “I heard of that”.  It is always a look of curiosity.  Maybe this can change, and I will certainly start to do my part.

As the first step to doing my part, I got the idea of making up business cards for Atticus.  This was one of those ideas that came to me during my morning commute.  I do some of my best thinking while driving to work, when my mind is clear and I’m enjoying my first cup of coffee of the day.  So these business cards will explain a little bit about Atticus – that he is really no different from you or me.  The only difference is that his tongue and lip are bigger than ours, and he breaths out of a tracheostomy – not because he even needs to, but because doctors don’t want to take any chances while he undergoes treatment for his LM.  Next time, when I am faced with a “What happened to him?” or a “Is that candy in his mouth?”, I can explain that he was born with a lymphatic malformation of his tongue and lip, but he’s perfectly fine in every way.  I can then offer out this card so that people will remember what I said and maybe even have lymphatic malformation as part of their body of knowledge.  Next time they see the a kid with a big body part, it won’t be a big deal.  The cards explain a bit about Atticus on the front and on the back, as much information about LM as I could possibly fit on a tiny business card, which isn’t much, but it’s enough to get started.  Click the link below to see a proof of the cards, and next time you see Atticus walking down the street, ask him for one of his cards.  He might just smile and give you one.

LMInfoCardProof2

The Beginning

This blog has been a long time coming.  Not only because I feel like I have a lot to say, but because I feel that I owe it to other parents out there who have a child with some type of rare medical condition.  Our son, Atticus, now 15 months, was born with a big tongue.  Not just big, but pretty huge actually.  It protruded out of his mouth and was so big that his mouth was permanently wide open.  We knew before he was born that this was the case, but I don’t think that family members or friends realized exactly how large we were talking.  Up until he was born, we didn’t know what was causing this large tongue – was it indicative of a more troubling genetic or chromosomal disorder?  Was it an isolated event?  Were there other not-so-obvious things wrong?  What would the quality of his life be?  What would his future be like?  Is it fixable?  There were so many things going on in our minds at that time and the last couple months of my pregnancy were some of the darkest days I ever experienced.

We drove to St. Louis on Sunday, May 6, 2012.  I was going to have a planned EXIT procedure, which is an extension of a C-Section, the following day.  May 7^th was dark and rainy.  We checked into the hospital early and I was put under general anesthesia.  I did not witness my child being born.  My husband, Brian, was not allowed in the operating room.  It was me and 28 doctors in the sterile hospital room.  I was so nervous that my body was literally jumping off of the operating table because I was shaking so bad.  Each team of doctors had their last names (color-coded by team) on their backs.  Every doctor was extremely focused and had a mission.  Their concern was delivering my baby, establishing his airway around this massive tongue, and closing me up before I lost dangerous amounts of blood.   They finally put me to sleep and I remember looking up at the light and wondering if I would ever see Brian again.  I know that sounds possibly exaggerated but I couldn’t help it.  I couldn’t help but think “What if they can only safely deliver the baby if I have to stay open and lose fatal amounts of blood”.  It was a concern.  All the while, I still didn’t know what was wrong with my baby.

Atticus Blake Kurilla was delivered on May 7, 2012 at 1:29pm and weighted 7lbs 7oz.  We had no family or friends in St. Louis (we didn’t even live there), so Brian was all alone waiting for updates on what was happening with his wife and baby.  He was talking to his mother on his cell throughout the delivery, but they were both probably too nervous to even know what they were saying.  I am glad that she was a comfort to him at that time though.  Once Atticus’ airway was established via breathing tube, he was put in an incubator and a team of doctors and security guards rushed him to the NICU in the St. Louis Children’s Hospital.  Brian was able to see him for the first time and I was still asleep.

I woke up some time that afternoon.  The first face that I saw was Brian’s.  I remember the first words that I said were “I love you”.  I was confused.  My stomach was smaller.  I had had a baby.  But, I still hadn’t seen him, hadn’t heard him cry, hadn’t heard those words “It’s a boy”!, had no idea what he looked like.  Brian told me Atticus was beautiful – that it looked like he had red hair.  I was still out of it and could barely comprehend what Brian was saying.  I received two blood transfusions because I had lost so much blood.

One nurse was assigned to taking pictures of the delivery, since neither me nor Brian were able to experience it.  They blew up one photo and put it near my pillow.  I saw him for the first time in that photograph – this mystery baby that I had carried for nearly 38 weeks.  He was beautiful.  In the photo, a doctor had placed two fingers over Atticus’ large tongue, so I still could not see what it looked like.  I remained out of it for the rest of the day and into Tuesday.  Still, I had not seen my baby.  I was not well enough to go to the Children’s Hospital.

Sometime on Tuesday afternoon, I began to feel lightheaded.  My heart rate shot up to 180 beats per minute and I was losing consciousness.  I felt my awareness slipping away.  Doctors rushed in.  Someone was asking me if I knew what year it was – if I knew who the president was.  I knew the answers at that moment, but felt that soon, I would not know the answers.  They asked me if I had a family history of heart conditions.  I thought of my grandfather who died when he was very young of a heart attack.  Did I have some sort of condition that I didn’t know about?  What if I die before I meet my child?  Doctors were puzzled and nurses were scrambling.  I didn’t know what was happening and was scared.  I looked over at Brian with his head in his hands.  This was a lot for him to go through.  Sometimes this happens when you lose a lot of blood, but they had already given me two transfusions.  They did an EKG and it was normal.  They thought maybe I had a blood clot.  They started giving me more blood and I remember starting to break out in hives.  Am I allergic to the blood?  They contemplated stopping the transfusion but soon the hives dissipated and I was getting more conscious.  They sent me for some sort of test to rule out blood clots.  I was in so much pain and was getting stuck with endless amounts of needles.  It was over 24 hours since I had given birth and I still had not met Atticus.  I didn’t know what he looked like and I still didn’t know what was wrong with him.

On Tuesday evening, they put me on a heart monitor and determined that I was well enough to go over to the NICU at the Children’s Hospital to meet Atticus for the first time.  I have to admit that I was scared.  What would he look like?  His facial malformation that I had only seen on ultrasounds would be real now.

Brian wheeled me over in a wheelchair and I was nervous going into the NICU.  When I first saw Atticus I thought he was beautiful and loved him instantly.  There were still so many unknowns though, and I remember being upset that this beautiful baby had this massive protruding tongue.  One nurse came in and said “He’s beautiful, but, hopefully they can do something about that”.  Well, what if they can’t?  I thought, “He is beautiful either way” and was offended at her words.

I remember Brian sending out texts to our family showing a just-born baby Atticus from about the nose up.  Were our family members ready to see the rest of his face?  They were all back in Pennsylvania and were dealing with all of the uncertainty from afar.  I remember Brian sending out a text asking close family members if they wanted to see a picture of his whole face.  That affected me.  I understand why Brian asked, and I would have done the same thing, but it made me sad that we had to ask this question.  Of course, they said yes, and for the first time, I think they realized how big his tongue really was.  They were confused, had never heard of this, and didn’t understand why this happened.  They wanted to know what caused this, and what would be done about it.  We didn’t have answers and neither did the doctors.

It was pretty clear to doctors that his enlarged tongue was an isolated event and was not related to a genetic or chromosomal disorder.  MRIs taken right after he was born proved that everything else was perfectly normal.  All of his organs were fine.  This was a HUGE relief!

We thought that Atticus would be getting a tracheostomy to help him breath and a feeding tube soon after birth, but two days after his birth, they removed his breathing tube and he breathed just fine on his own!  Most of the tongue enlargement is in the forward part of the tongue and not the part that goes down your throat.  Next, came feeding, how was he going to eat with a tongue this size?  Well, super baby did it on the first try.  His doctors were so pleased and he was released from the hospital after only 11 days.

I remember not feeling ready though.  I felt that we were getting discharged and still didn’t have any answers.  We still didn’t know what was going to be done about his tongue.  I had never seen anyone with a tongue this large and expected them to just surgically correct it right after birth.  Things are not that easy though.  I was worried about his future and what it would mean for him to go through life with a facial malformation this noticeable.

I quickly learned, however, to let go of needing answers.  He was healthy and beautiful and OURS!  This baby that I had wanted for so long was now here and I was not going to get hung up on the “What ifs”.  I focused on all of the positives of the situation – number one being his health and the fact that cognitively and mentally – he is perfect.  I was grateful that Atticus has what is called a lymphatic or vascular malformation, and not something that will affect his development.  I focused on the fact that he will lead a long and normal life and all of the struggles that this big tongue might cause will only make him a stronger and more compassionate person.

The doctors at St. Louis planned a wait-and-see approach.  Sort of follow the course of his tongue and see how it grows as he gets older.  They planned that he would have a surgical tongue reduction later on, probably sometime around his first birthday.  Brian and I accepted this approach.  It was not a quick fix approach, but we realized that there would not be a quick fix.  This would be a long process and one where Atticus’ tongue might never be a ‘normal’ size.  Only time will tell that.

For now, I firmly believe that we were given Atticus for a reason and he was given us for a reason.  We love him so unconditionally and believe that he will embrace himself, his strengths, his weaknesses, his imperfections, and that he will grow into a strong and amazing individual.  His life will not be ordinary, but that is not a bad thing.  Brian and I often joke that Atticus is already so much more interesting and cooler than we are and he is only a baby.  I also truly believe that Atticus has saved me and changed me in deeper ways that I ever could have experienced, had we had a normal delivery and a baby with no abnormalities.  He has made me a better, more carefree person.  He has taught me that things will work out, things will fall into place, and to accept things, and see the positives.  My life is so much brighter since I met him.  I always say that he cured me of all of my anxieties and worries.  I can honestly say that I enjoy every day of my life.  I don’t worry about anything unnecessarily and I am truly grateful for everything that I have.