EXIT Procedure

When Atticus was born, I was unconscious.  Brian wasn’t able to be in the room.  There were 28 doctors involved in the surgery.  It was not a typical birth experience by any means.  Neither me nor Brian got to witness our baby being born and we didn’t get to hold him until well over 24 hours after his birth.  I gave birth to Atticus via an EXIT (ex utero intrapartum treatment) procedure, which is necessary if the baby has airway compression.  During an EXIT procedure, the baby’s head and arm are delivered and a pediatric surgeon establishes the baby’s airway while the baby is still receiving oxygen through the umbilical cord which is still connected to the mother.  According to Wikipedia “the EXIT is much more complex than a standard C-section, as it requires careful coordination between the mother’s physicians and the specialists operating on the newborn baby.”

I’m glad that I didn’t know then what I know now.  I really wasn’t even all that nervous about the procedure, probably because I had so much else to focus on.  Even though our birth experience wasn’t the typical ‘romantic’ experience that lots of couples get to have, I am forever grateful that a surgical procedure exists that allowed my baby to enter the world safely.

One day, while I was stumbling around the Internet, I came across the video below and was so shocked to see that the doctors/hospital featured in this video are the same ones who performed my/Atticus’ EXIT procedure.  The ENT surgeon who speaks a lot on the video, Dr. Molter, is the doctor who successfully established Atticus’ airway while he was still connected to me.  You could see the insane amount of doctors in the operating room.  That is what I remember before going to sleep.  All of those doctors, all there to safely deliver my baby.  The fact that so many doctors were necessary was overwhelming and scary.  In the video, I can recognize a lot of the same doctors that took part in my EXIT procedure.  This video really brings me back and I can barely watch it without it bringing a tear to my eye.  It brings me back to how scary the whole thing was, but also how amazing all of those doctors were.  I’m so grateful to them.

It’s a great video, and it is not graphic.  Enjoy.

http://www.stlouischildrens.org/media-center/video-library/delivery-exit-procedure-the-rouse-familys-story

It’s Amazing How the World Works

It’s funny how things happen – how the world has a way of bringing people together.  We’ve been in Charlotte for a little over a year now and it was time for me to find an OB/GYN here.  I didn’t do my normal method of just picking a doctor based on location or convenience (although that was still a factor).  I really researched this one.  Especially since my experience having Atticus was nowhere near ordinary, I really needed to find someone who would listen to my story and be sensitive to my needs should me and Brian decide to have another baby.  I wanted my new doctor to be a woman, not be too young nor too old.  I researched how long each doctor has been in practice and where they went to medical school.  Finally, location mattered too.  Preferable close to work, since if we do have another baby, I’d be going to my appointments from work.

I finally found someone who looked good and I went to my appointment.  I explained everything to her – the ultrasound at 32 weeks with the large tongue, the fetal MRI, the EXIT procedure, the tongue reduction surgery.  I even went prepared with my print out explaining the EXIT procedure just in case.

I was surprised at the doctor’s look of recognition when I mentioned tongue reduction.  She explained that her best friend has a daughter with Beckwith-Wiedemann Syndrome and that this child was also born with a large tongue and has had a tongue reduction surgery.  Wow, I thought.  What are the odds of this.  We talked about being grateful for these kids and how well they are doing, and how she sees so many patients who really don’t know how good they have it.

The doctor consulted with her best friend to see if she would be interested in talking with me.  She was.  We met today for lunch and talked about our amazing children.  Her daughter is doing extremely well.  We talked about our experiences with tongue reduction surgery.  I never thought I’d be having this conversation with another mom over lunch.  We compared before and after pictures of our children, before and after tongue reduction.  She knew the feeling of trying to snap photos when the baby was holding their tongue in.  Not many parents know that feeling.

It’s interesting the way the world works.  I researched and researched my Charlotte OB/GYN and she connected me with a mother who I could talk to about things that no one else would understand.  This is something to be grateful for and I’m once again amazed at how things come together.

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.