Metopic Craniosynostosis

Updated Pictures of my handsome 4 year old!

The most noticeable part is the scars is
above his ears on either side. This
spreading of the scar doesn't always happen
but he seemed to have a lot of swelling
after surgery in this area which stretched out
the scars.
The scares are most noticeable after a hair
cut (which is during this).

You can kind of see in this picture his squiggle
scar that goes across his head from ear
to ear. It's not super noticeable.

I often get asked about Jackson's scar on his head.  Although his hair has grown A LOT since his surgery, it is still pretty obvious I think.  People are so funny about it though.  We usually get double takes or triple takes and only some people are bold enough to ask. WHICH IS FINE!  I don't know why people are so scared to ask.  Maybe because they think they will offend me? I don't know.  But some do ask and I reply he had Metopic Craniosynostosis. Metopic cranio whata wha?

Short Answer: He was born with one of his suture lines on his skull fused together
Long Answer: Babies are born with multiple bone pieces in the skull and the line between them is called a suture line.  Sometimes babies can be born with one of those suture lines fused or with multiple fused.  The result is usually deformation of the skull somehow. A prominent ridge along the forehead by itself is often a normal finding, but children with metopic synostosis from premature fusing of the metopic suture have a triangular shape to the forehead. There are varying degrees, mild where no surgical intervention is needed to severe where they need surgical intervention and they may have problem with vision, learning, or behavior.

You can really tell the ridge when the flash on the camera would hit it

Jackson we think, falls right in the middle.  When he was born  we noticed a little ridge down his forehead but as he got bigger it got a lot more noticeable and prominent.  I never really noticed his eyes being close together until the doctor brought it up, and from then on I did (Thanks Doc!).

While in Colorado, our pediatrician had us get an x-ray to see what he thought.  He said he was 95% sure that it was fused and when we move to Kentucky we need to get a referral to a neurosurgeon.  Dr. Pittman... there are many words to describe him.  Brilliant: Everyone told us that if there was a neurosurgeon they would want operating on their child's head, it would be Dr. Pittman. Not Punctual: I waited for an hour in the waiting room and then an hour and a half in the room. Blunt:  He walks in, doesn't introduce himself, puts his hand on Jackson's head, looks at me, says "Your son needs surgery." Oh, hey My name is Lesley, this is Jackson... nice to meet you Dr. Pittman....? Training the best: At a different doctor appointment, we only saw one of his residents (which was fine) and he was having us sign paperwork for Jackson's surgery.  He didn't go over any of it like they are supposed to so we asked "what are the risks?" He says "That he won't look like how you want him to look like." Wait... Soooo you think we are doing this surgery for cosmetic reasons? You think we are going to be disappointed if he doesn't look like what "we want him to look like?" How about stroke? death? brain damage? Man, I wanted to pop that guy in the nose! Who WANTS their baby to have surgery on his skull???

Why does he need it? Because the skull cannot expand perpendicular to the fused suture, it compensates by growing more in the direction parallel to the closed sutures.  Sometimes the resulting growth pattern provides the necessary space for the growing brain, but results in an abnormal head shape and abnormal facial features. In cases in which the compensation does not effectively provide enough space for the growing brain, craniosynostosis results in increased intracranial pressure possibly leading to visual impairment, sleeping impairment, eating difficulties, or an impairment of mental development combined with a significant reduction in IQ.

So he needed it.

Luckily Dr. Liau, the plastic surgeon, saved the day.  If Dr. Pittman was going to be the only person dealing with our boy, I don't think I could handle that. On the first day in Dr. Pittman's office, he had Dr. Liau come over and take a look.  Hands down, nicest doctor we have had.  He came in, greeted us, played with Jackson, discussed anything and everything! He also confirmed that Jackson would be needing surgery but that it was a routine procedure that he and Dr. Pittman do often.  He also informed us that Dr. Pittman's part of the surgery was only going to be removing the bone from the skull and that was it.  Dr. Liau did everything else!  Dr. Liau also gave me his e-mail address so I could e-mail him any questions I had.  I did.  A lot.  He always answered the same day with the answer! WOW. He told us the statistics: 3-5% change that he already has brain damage and a 3-5% chance that the surgery will cause it.

In a way this surgery was a lot scarier than the open heart surgery.  This time I had time to think, time to research, time to prepare.  I guess that also made it easier.  I knew what to expect, I knew time frames.  We arrived early in the morning and Jackson was happy as usual.  Everyone stopped by to see the baby and to play with him.  That always makes a mom feel more comforted, knowing that he has a bunch of moms, grandmas, aunts, uncles, and dads as nurses and doctors around him.

It was really hard saying goodbye, but we had a family prayer and I felt the reassurance that I had previously talked about.

This hospital experience was VERY different though.  We had to sit in a waiting room with a bunch of other people who had family members also having surgery.  Some serious and unexpected, some routine.  This time we didn't have calls every hour (AWFUL).  We had a screen and Jackson had a number that said where he was (pre op, operating room, operation finished, etc).  That hurts your eyes after awhile.  After 2.5 hours we still hadn't heard anything and we were getting so nervous.  Finally they called our name to pick up one of the surgery phones.  They had JUST gotten started.  They had a hard time getting Jackson hooked up to IV because he had been stuck so many times.  They had a whole team and had to eventually call the head anesthesiologist to come and do it.  They updated us a little better after that and then all of a sudden they called our name to a consultation room.  The room where they tell you everything went great or something went wrong.  Thankfully Dr. Liau came in with a smile on his face and said it went great and that we could see him in about an hour, after they get him up to the ICU.  Sigh of relief and one anxious mama!

The procedure (Cranial Vault Reconstruction): They make a squiggly incision from one ear to the other. They take the frontal bone out of the skull and cut it into 3 different pieces.  One long piece that sits over the eyes and then the top of the frontal bone is 2 pieces.  They do this because their heads are usually pinched at the temples. Next they pull the bones forward on the sides, leaving a space between the frontal bone and the side of the skull.  They then use plates and screws to hold them together that will dissolve in about a year. Doing this would also make his eyes a little further apart and allow the brain to grow normally.

Day 1; The Mummy: Thankfully I read blogs and knew what to expect to see.  It was so good going in and seeing him.  He was still asleep but you could tell almost immediately that his forehead was flat.  He had on a big turban like wrap to help control the swelling and cover his wound.  This night was hard because I couldn't hold him and he wasn't waking up.  He hadn't eaten for 18 hours and the nurse said he had to drink pedialyte before I could try to nurse him.  Being a slave to the pump all day was the worst! He still wasn't waking up and I could tell he was hungry.  He kept mouthing and making a sucking face.  So I just put a bottle up to his mouth and he CHUGGED! After that they let me nurse him.  That was a challenge because I had read that they are usually uncomfortable nursing because of the position and their big swollen head and they were right.  He did fine on the right side but refused to do the left side.
That night I think I slept 3 hours.  Couldn't settle down, wanted to see what the nurses were doing when they would come in, wanted to hold him SO BAD but was scared to at the same time.

 Day 2; the little Buddha:  Again, thankfully I read blogs before hand, because this is the day his head was swollen so much his eyes swelled shut and couldn't open them. Jackson didn't feed very well at all. They tried taking him off his IV so you he would be thirsty and would want to nurse. They also took his catheter out.  They moved us from the PICU to the progressive care unit into a shared room.  He slept pretty well because they had his pain under control.  Jackson did throw up in the middle of the night (due to pain medicine) and they had to start him back on his IV since he wasn't eating. The shared room was definitely an experience.  We shared with a couple that was obviously stressed and yelled and swore at each other ALL night.  It was actually kind of scary.

Day 3: They moved us into our own room! The couch pulls into a bed but it's not big enough for both of us, so Scott slept on a crib matress on the floor. What an awesome husband!  Jackson's swelling started to get better this day!  We start to see his eye lashes again. They also stopped his IV again since he was so swollen.  Once they stopped he started nursing so well! He still wouldn't lay on his left side but if I held him different he would. That would have made for a funny picture if I wasn't nursing at the time! He also started acting more and more like himself. He started having some brief awake moments where he would hold his head up when we hold him and he would play with his toys, even if he couldn't open his eyes.

 Day 4: The night before he ate almost every 3 hours which is almost back to normal.  At 3 am he finally opened his eyes! He could only do it a little, but we could see them!  This day was a good day for him. They took him off morphine but the other medicine they put him on made him throw up 3 times that day! One was projectile vomit which he had never done.  It was kind of scary because throwing up is a symptom of increased cranial pressure (and he had a lot of swelling in his head still) but the doctors assured us that he was fine, because the surgery had given him a lot of extra room in his cranium. He also pooped for the first time since surgery! He had more awake moments, kicked his piano and played with toys and smiled! It was really important to us to have toys that made sound and had lights so he could see something when they were swollen shut and have familiar sounds to listen to.  The swelling in his face was better, but it had moved down to his throat and his head was still pretty big.  After I nursed him, he would have a big dent in the side of his head from the fluid getting pushed to the side, it was kind of funny looking.

Eyes open!

The space alien look

 After 5 days we got to go home! Thanks Dr. Liau for your hard work! We were so blessed again! Wonderful hospital, doctors, and nurses.  Also so blessed to be a member of The Church of Jesus Christ of Latter Day Saints.  We had a homemade meal for dinner every night and countless prayers and thoughts on Jackson's behalf and our dog Scout was well taken care of all week.

His scar.  Pretty gnarly looking and bruised but he was back to his old looking self in about 2 weeks! With a bigger head of course!

The best picture I have of his scar now (8 months old).  It looks great on top, but because he had so much swelling on the sides of his head after surgery and he hit a growth spurt it made his scar wider than it is on the top.  He also has keloid scarring (your body sends too much of the building cells and makes the scar bulge and stick out.  It's a genetic thing.  Some people scar like that and some people scar flat.)