Thomas Joseph Phelan was born on Monday, May 18, 2009...a healthy and beautiful baby boy!  We were so thrilled and I instantly fell in love.  Everyone kept telling me about the special bond between a Mother and her son...now I knew!  Thomas was so lucky because he had two big sisters who couldn't wait for him to come home and be a part of the family.  And I was excited to have two fabulous little helpers!
Thomas was the perfect little newborn, settling right in with a nice eating and sleeping routine and hardly ever crying.  He was nursing well and growing like a weed!  And Brianna and Katie were THRILLED to have a little brother.

On June 4th, Thomas had an appointment with the pediatrician for his two week check-up.  It started off as just a routine visit to Dr. Gruenwald's office.  The nurse escorted us to an examining room, checked his height and weight and told us to undress down to a diaper...the doc would be right in!  It is always fun seeing Dr. G, with all of the cute little animals dangling off of his stethoscope.  And so his exam began...

I was a little caught off guard by the lack of talking Dr. G was doing and how he seemed to be taking a little bit of extra time in "looking" at Thomas.  Maybe this was how it was with a newborn....it had been 4 1/2 years for me, so I couldn't remember!  The next moment is when I was horrifically introduced to the word CRANIOSYNOSTOSIS.

Cranio, huh?  The rest of the appointment is a complete and utter blur to me.  Dr. G sounded like the teacher in the Charlie Brown shows, blah, blah, blah,not making a bit of sense!  The only thing that I can remember is that he was "concerned about the shape of Thomas' head" and whatever these medical terms that were being thrown at me, all of his explanation of only seeing this twice ever in 30 years of practice....the bottom line, skull surgery!!!

This could NOT be happening!  After getting a referral for a pediatric neurosurgeon in Hackensack, NJ, I left the office like a complete zombie, trying to hold it together for the sake of Brianna, who happened to be with me.  Driving home was horrible...I just wanted to scream and cry and convince myself that there was no way that this could be happening to my little baby, my angel Thomas!!

For the week that followed, I became overly consumed with finding out as much information as possible about this cranio, whatever it was called.  With an appointment on the calendar to see Dr. Fried, I spent every free waking minute on the computer.  The internet is such a double edged sword....as much as I became education about Thomas' potential diagnosis, I was horrified by some of the stories and extreme pictures that I found!  I cried and cried and cried and asked over and over again how this could be  happening?  I looked at Thomas all day, every day of his life....he didn't look like these other kids online!  His head looked beautiful to me, not oddly shaped at all!  The doctor HAD to be wrong!  But, deep down, I knew that the Dr. G's suspicion was probably correct.

We drove to Hackensack on June 11th, a rainy Thursday afternoon, to meet with Dr. Fried at the children's hospital.  Sitting in the waiting room was so heart wrenching.  There were children there with all kinds of visible "problems"....it was so sad and I kept looking down at my three week old perfect little baby....there was no way!  Once we were finally called in, Dr. Fried came in and introduced himself.  He felt Thomas' head, looked at him at every different angle imaginable and the turned to us and said, "Thomas has craniosynostosis...his sagittal suture is fused".  Deep down, I knew it....but hearing him say those words, I just cried.  Again, the Charlie Brown teacher voice.  I don't remember a thing, just the blurred words "skull surgery" and "incision in the scalp from one ear to the other".  He kept asking us if we had any questions.  I just held my baby...too afraid to speak, because I knew that I would just start bawling!  He then handed us a prescription for a CT scan, to confirm his diagnosis, and told us that ideally, surgery should be done when Thomas was between 12 and 15 pounds.  Which, his guess was about three months of age.  Appointment over....call the office to schedule surgery when Thomas weighs enough.

My emotions were on a total roller coaster, to say the least.  I kept the news about Thomas pretty much to myself.  I think it just upset me too much to even talk about it.  Although, sharing my feelings with family and a few close friends did help me to try and start making sense of it all.  I had a newborn baby....this was not supposed to be happening!!  The CT scan was scheduled for June 17th and I don't think that I would have been able to stay strong through it all if it weren't for my good friend Stacy.  Through her connections at St. Barnabas, we were assured that Thomas would be cared for phenomenally!  And he was.  She always knew exactly the right thing to say to keep me calm.  There is no better gift than true friendship!!

The scan, although very uneventful, was very difficult for me!  Thankfully Thomas did not have to be sedated because he was so young.  I was able to nurse him and he fell right asleep.  I had to put on what looked like a space suit and stand next to the big machine, leaning over with my hands on Thomas' chest so he would stay still.  I remember my tears dripping by his side as he went slowly in and out of the huge scan machine, so peacefully sleeping and completely unaware of  what was going on.  Quick and painless, appointment over...now we would just have to wait for the results.   Two days later, confirmed...it was "clear as day", Thomas had craniosynostosis.

For the next couple of days, my parents, brother and brother-in-law decided to also become consumed with the information overload found online.  My mother specifically was intrigued by the "less invasive" method of surgery, used to treat the same type of craniosynostosis.  There was a doctor in Manhattan at Columbia Presbyterian who performed the surgery.  He had a website with his bio and a complete description of the endoscopic surgery that he had successfully used for the past several years.  My parents and my brother Tim were huge proponents of getting a second opinion.  How could it possibly hurt driving into the city to just meet with this doctor?  I personally did not even see the need for getting a second opinion.  Yes, Thomas had sagittal synostosis.  And yes, there was only one way to correct it...surgery.  We liked Dr. Fried, our pediatrician had referred us to him, he was willing to perform the surgery at St. Barnabas so we could be close to home, what was the point of looking any further??    Eventually, I did put my stubbornness aside and called for the consultation.  Dr. Feldstein could see us on Tuesday June 23rd.   Ok fine, we will make everyone happy by going to get the second opinion...what harm could it be anyway at this point. 

Now, in the couple of days that we had to wait for our next appointment, I decided to tackle the battle with the insurance company.  Just our luck...not only did neither surgeon accept our insurance, but we did not have out of network benefits.  The whole bill would fall in our lap!  So now a new wave of panic set in...how in the world would we ever come up with thousands and thousands and thousands of dollars to pay for Thomas' surgery?!  I flipped through the various denial letters from the insurance company and found the short list (2) of pediatric neurosurgeons that they would approve.  The first, although close, was not even pediatric board certified and the second, was not close to home...all the way down in Philadelphia!  So great....now what!?

On a beautiful Tuesday afternoon, Joe and I drove into the city with the kids.  We dropped Brianna and Katie off to Tim and Miche for the day (they were thrilled to spend time with their uncles!) and Joe and I drove uptown with Thomas.  The entire drive up I kept thinking to myself, "this is crazy, there is no way I am coming all the way up here to this part of the city with my baby, why am I wasting my time, there was nothing wrong with Dr. Fried, I hope this makes my mom and Tim happy, yadda, yadda, yadda...".  We finally got to where we were going at Columbia Presbyterian and made it to the neurosurgery department and Dr. Feldstein's office, 15 minutes before our appointment.  Which, if anyone knows me well, is a miracle in itself!  Dr. Feldstein immediately called us in to his office.  He did not have to even take a second look at Thomas or any CT scan to see that yes, he did in fact have craniosynostosis.  He was such a nice man and spent more than an hour thoroughly talking to us about craniosynostosis....what it was, what it means for a child who is diagnosed with the condition, what medical studies have been done about a child's development, the different methods of surgery and recovery, etc.   It was fascinating to listen to him speak so thoroughly about craniosynostosis!  He was so smart and so well spoken.  He took a lot of time and with great detail to explain to us his preferred surgical procedure for correcting Thomas' condition.  It involved using endoscopes, making two small incisions on the top of his head and cutting into the same piece of the skull as the other method, just in a much less invasive manner.  This type of surgery would only require an overnight stay in the hospital, no swelling, there was very little to no bleeding and therefore no need for a blood transfusion.  Thomas would then have to wear a helmet for a year, going for adjustments every couple of weeks.  Dr. Feldstein prefers to do the surgery at 6-11 weeks of age, which is right where we were.  We left our name for another family to call us so we could speak to someone who had been in our very same shoes.  There was also a very nice woman who would handle talking to the insurance agency for us.  We paid our $200 consultation fee and were on our way.

In the car ride back downtown to Tim and Miche's apartment, Joe and I talked about how incredible the meeting was and how amazing it was that two pediatric neurosurgeons could have such different opinions and methods for surgical correction of the same type of craniosynostosis.  We kept reminding ourselves that no matter what, surgery was necessary.  So, if we could go about surgery in a much less invasive manner for our baby and still get the same end result, then why the heck not?  It all made sense to us, it was a fabulous hospital, Thomas was the perfect candidate.   We were convinced, after much back and forth discussion, that as much as we really liked Dr. Fried, it was best for our baby to go the less invasive route and start planning surgery with Dr. Feldstein.  We even thought that Brianna and Katie would have a lot of fun decorating their brother's helmet!  They were both thoroughly prepped for the road we were about to walk down with Thomas.  Thank goodness for getting a second opinion!

Reality set in again with the insurance companies.  I was not getting anywhere and there was not a chance that we were going to get any out-of-network benefits.  So, time to start thinking of a new plan of attack...just in case.  I decided that it could not hurt to call the neurosurgeon's office down in Philadelphia, Dr. Sutton.  We already had two opinions, why not a third?  The nice woman on the phone told us that he could see Thomas the next day.  So, plans were made again for Brianna and Katie (such troopers, those girls!) and Joe, Thomas and I made our first trip down to CHOP. 

On the way down, we talked a lot about the different options we now faced.  Do we pick a surgeon just because they take our insurance?  Or, do we choose the best doctor for Thomas and worry about the money later?  Obviously, as a parent, we want what is the absolute best for our children.  But at the same time, you do have to be realistic about financially making ends meet.  There was so much up in the air and we still were tossing all of the information around about the two surgeons we had already met and how their surgical methods were so different!  We decided not to make any decisions until we heard what Dr. Sutton had to say.

Sitting in the waiting room was torture.  As phenomenal of a hospital CHOP is, it was depressing to see so many little patients.  Although, I could clearly see from the second we even drove into the parking lot...if god forbid you did have an issue with your child, this was the place to be!!  There was an adorable little boy there in the waiting room with his parents, smiling and laughing, cute as could be!  Even with the giant zig-zag scar that ran across the top of his head...Oh my goodness....there was no way that Thomas could potentially look like that!  Imagining my baby with all of those stitches was heart wrenching, so I turned away to distract myself with an outdated trashy magazine that lay on the table next to me.  In hindsight, I wish now that those parents had seen us there with Thomas, obviously scared and there for our first meeting, and made an effort to talk to us.  Easier said than done, I am sure.  Finally, we were called in...

After very brief introductions, Dr. Sutton started right in with his "craniosynostosis schpeal".  It was very apparent that he had given this talk to many other parents in the past.  To him, surgery seemed like a walk in the park!  He went into very explicit detail of the surgery he would perform on Thomas....the whole time my jaw practically on the floor!  He would make a zig-zag incision across Thomas' head from ear to ear, "flap open" his scalp and use his little jig saw to cut the skull here and there and make little slits on the sides, yadda, yadda, yadda, stitch him back up, he would spend a couple of days in the PICU, maybe have a little swelling and then be on his way to life with a new shaped head!  I just kept thinking that thank goodness this was our third meeting and not the first, that we were very informed and had done all of our homework...it made all of Dr. Sutton's talk about Thomas' surgery that much easier to swallow.  He certainly did not sugar coat a single detail!!  He even went into an explanation about the "other" surgical method, the endoscopic way of correcting craniosynostosis.  In his mind, he couldn't imagine that anyone would even think of such a "stupid" procedure.  He wanted his patient's head open and right in front of him so he could use his hands and there were no surprises.  Um, ok!  So everything that we had thought about going ahead with Dr. Feldstein's surgery was just thrown out the window.  I just thought to myself, "back to the drawing board!".  Unbelievable...three pediatric neurosurgeons with three completely different opinions!! 

Dr. Sutton was done talking, a few of our pending questions were answered and we were sent on our way.  If we wanted Dr. Sutton to do Thomas' surgery, we were to call the office and schedule an appointment for when Thomas was three months old.  Joe and I walked to the elevators in silence, both of our heads spinning!  We left the hospital and went for a burger and beer....we needed to sit down, exhale and talk about what we just heard in Dr. Sutton's office.

It didn't take much for us both to agree that without a shadow of a doubt, Dr. Sutton was the way to go!  Although the most aggressive, his method of surgery was the best option for Thomas and would result in the greatest outcome.  We knew that Thomas would be in amazing hands down at CHOP!  And the bonus was that our nightmare with the insurance company battles would be over.  They approved Dr. Sutton and we would only be responsible for the $500 hospital co-pay.  It was such a relief and a HUGE burden lifted off of our shoulders after we had finally made up our minds.  I called his office a couple of days later and scheduled Thomas' surgery for Monday August 24th.  He would have to come down for a pre-op visit the week before...all of the information would be sent to us in the mail.  So now, we just had to wait!!

Having Thomas' surgery on the calendar was relief great, but at the same time put such a damper on the summer.  We constantly talked about and anticipated what was going to happen to our baby.  I felt like I was just wishing the days to pass so we could finally put this nightmare behind us!!    Before I knew it, it was August and with each day, I became an emotional mess....nervous, anxious, scared, everything that you can imagine.  I did every bit of homework possible to help me prepare for Thomas' big day.

Please visit the surgery updates & photos page for information about Thomas' surgery and to read daily updates during his stay at CHOP.  Also, visit the recent posts page to keep up-to-date on our lives after craniosynostosis surgery.