Neurosurgeon Appointment

We had our appointment with the neurosurgeon on 9/23/13.  Mason's Neurosurgeon is Dr. David Wrubel with CHOA.  He is a wonderful and nice man, and we felt very comfortable with him.  You can read more about him here http://www.choa.org/childrens-hospital-services/neurosciences/programs-and-services/neurosurgery/meet-the-team/david-m-wrubel and here http://www.emoryhealthcare.org/neurosurgery/surgeons/david-wrubel.html .

We were prepared to have to wait a long time upon arriving for our appointment, but didn't have to at all - it was very nice!  I filled out a little bit of paperwork and we were quickly directed back to a room where a sweet nurse met with us first.  She asked us questions regarding my delivery, why we thought he needed to be seen, etc..  I love how much all of the CHOA employees love children and babies - it makes this process a little easier to bear.

Dr. Wrubel came in and introduced himself to us and examined Mason's head.  He was very sweet and gentle with Mason, and told us that he has a 1 yearold daughter himself.  For some reason, that makes me feel more at ease... I know that he knows how it feels to love your child and be worried about them.  I think it is one of the things that made me feel more comfortable with him.

When we got down to talking about "business", he confirmed what we already knew from our research and intuition - Mason has Sagittal Craniosynostosis.  He told us that he was going to pretend that we didn't know anything about it from researching or that this was his diagnosis, so that he could give us all of the information and not miss anything.  He explained what it is, how it effects Mason, that he has to have surgery to correct it, etc..  He was very thorough and comforting throughout it all.  I was very surprised at how well I took the confirmation of the diagnosis - I had prepared myself for ove 2 weeks to hear those words, and my heart already knew what we were going to be told.  It doesn't make any of this any easier, especially the idea of my baby being operated on and being in pain.  Sometimes this whole situation feels so surreal and I wish it was just a bad dream.

The most surprising and nerve-wracking part of the entire conversation, was when we started talking about the surgery.  We went into the appoinment thinking that Mason would be a candidate for the less invasive "Strip Craniectomy" since it was likely that he only had the sagittal suture fused and since he is less than 3 months old.  We were praying for that surgery because it is less invasive, has less risks, less swelling, less blood loss, shorter hospital stay, etc..  I guess I never thought that he wouldn't be a candidate for that surgery.

Dr. Wrubel feels that Mason needs the full "Open Craniectomy".  It is a big, serious surgery, and scares me to death. The hospital stay is longer, there are more risks, recovery is longer, he will likely need a blood transfusion during surgery, there is more swelling, etc..  The surgery itself is about 4-5 hours and consists of removing parts of the skull, reconstructing it, and putting it together with dissolvable screws and stitches.  In his words, Mason's head isn't the worst he has seen, but it is very noticeably misshapen and obvious.  In order to achieve the roundness of a normal skull shape and allow the brain to expand and grow, he doesn't feel the strip craniectomy would work.  The one "positive" to the full vs. strip, is that Mason won't have to wear the restructuring helmet that goes along with the strip craniectomy (the helmet is very different than the ones you see some babies wear who have flat spots on their head).  We have to trust that the doctor knows best, and that this is what Mason needs.

Seeing the CT scan was pretty neat.  We are going to get a copy of it and will try to post it if we can.  It was cool to see the 3D image of everything and be able to physically see the problems with his skull.  It was crazy to see that suture completely fused and closed compared to what it should look like.  The positive thing about the CT scan, is that his brain looks really good right now - please pray it stays that way.

We don't have a set surgery date yet.  Dr. Wrubel said that they might wait until Mason is 4-6 months old.  This is so that his bone can thicken prior to surgery so that it can be shaped correctly.  According to the CT scan, Mason's bone is a little thinner than they like to see it be for surgery to begin with.  As hard as it might be to wait, I actually feel slightly better knowing he will be a little bigger and stronger for the surgery.  I pray that he will handle the surgery better since he will be older.

The next step is to meet with the partnering plastic surgeon that does the surgery with Dr. Wrubel.  Apparently, he is the one that determines when the surgery happens.  We have an appointment with him on Wednesday at 9:00am.  As much as I dread the surgery and wish it didn't have to happen, I am ready to know a date so we can prepare for it mentally, emotionally, and financially.

Please continue to pray for sweet Mason.  Please pray that his body continues to grow and strengthen to handle the surgery, that his brain continues to be healthy and not be effected by the Craniosynostosis, that the surgeons are led to perform this surgery to the very very best of their abilities, that Mason won't be in pain and have a lot of blood loss, and that his healing is fast.  Please also pray for Clay and me - as you can imagine, this is very hard to grasp and go through as parents.  There aren't many moments that go by that I don't think about and worry about the surgery.  Sometimes I wish I wasn't so tender hearted and sensitive.  I can't help but think how unfair it is that this happened to Mason.  Its unfair that these things happen to any sweet, innocent children.  I know and have to remember that God is the ultimate healer, and that He is in control.

Here are 2 Bible verse that I have tried to remember lately:

Isaiah 43: 2 

"When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up- The flames will not consume you."

and

Philippians 4:6-7 

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Mason's CT Scan

Mason had his CT scan performed on 9/20/13 at CHOA.  When the appointment was scheduled for 9:30am, the girl on the phone told me that he couldn't eat past 6:00am - this had me VERY nervous, since my chunky monkey eats every 3 hours like clockwork during the day.  How are you supposed to tell a newborn that he isn't allowed to eat?!  This is done in case they have to be sedated, which I understand.  I made sure to wake up and feed him right at 6:00am and prayed he would be able to hold off until 9:30.

We arrived at the hospital at our scheduled appointment time and got all checked in and waited to be registered.  Mason of course woke up and started acting hungry.  Thankfully, I had grabbed my Baby K'Tan Sling before we left the car.  I put him in it, gave him his pacifier, and he thankfully zonked out.  I was able to keep him asleep the whole time - praise God!

We were finally called around 10:15am.  The nurses and radiology staff were super nice and caring of our sweet baby.  We walked into the CT scan room and quietly and carefully took him out of the sling.  He was laid on the CT scan, wrapped in warm blankets, and covered with a protection vest thing.  He thankfully stayed asleep the entire time.  They had to redo the scan due to him moving his head a little, but the entire thing was painless and easy.

After it was all over, we woke him up and fed the hungry little guy out in the lobby.  As we sat there, I was reflecting on what an amazing place CHOA is, and how neat it is that it is geared towards kids.  There is a cool fish tank with "Nemo", bright colors everywhere, and kid-oriented decor.  There were 2 clowns that were going around to the kids that were in the area.  What a great place and a blessing to us parents to know we have this place nearby!

It really pulled at my heart strings to see our little newborn in that machine.  The reality of his condition came out all too clear, as did the fact that he is going to be around all of this medical equipment and operated on.  I knew all this prior to the CT scan, of course, but seeing him there made it even more real.  I had to fight hard to not cry and be strong.  I know that is something I am going to have to learn to do through all this.  Please pray for our strength through this.


This is a picture of the CT scan machine at CHOA that Mason was in.  Obviously Mason doesn't benefit from the projection on the ceiling, but so neat that they have that for the bigger kids!

Craniosynostosis

Here is more information on Craniosynostosis, while I am writing the next post on Mason's upcoming skull surgery.  Mason has Saggital Craniosynostosis.  There are explanations of 2 kinds of surgery below... Mason has to have the full surgery.

What Is Craniosynostosis?

Sutures most often involved in craniosynostosis (drawn by Raymond Sze)

Craniosynostosis (pronounced crane-eo-sin-os-TOW-sis) is when one or more of the special joints in a baby's skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby's skull cannot grow properly.

Sutures are located between the bone plates in a baby’s skull. They allow the baby’s head to come through the birth canal. After birth, the sutures let the skull get bigger to make room for brain growth.

After infancy, the sutures slowly begin to grow together to fully connect the skull bones. The skull bones begin to grow together when children are about 2 or 3 years old, but the process is not fully complete until adulthood.

The diagram below shows the several sutures in a baby’s skull. A baby can have one or more fused sutures.

When any of the sutures grow together early, the baby’s head develops a specific shape, depending on where the fusion occurs. You can usually see an unusual shape to a baby’s head at birth or shortly after. When several sutures close early, the baby's head can't expand to hold the growing brain. This can cause increased pressure in the skull that may hurt brain development.

Watch this video to learn more about craniosynostosis.

 

Craniosynostosis in Children

Craniosynostosis is usually present when babies are born (congenital). There are different types of craniosynostosis. Most children with craniosynostosis have only one fused suture. Otherwise, they are healthy. Craniosynostosis of the sagittal suture — where two bones on the top of the head come together — is the most common type. It happens most often in boys.

Doctors don't know exactly what causes craniosynostosis. 

Symptoms of Craniosynostosis

The first sign of craniosynostosis is an unusually shaped head. Other symptoms of craniosynostosis include:

• Soft spot (fontanelle) on baby's head disappears early
• Raised ridge develops along the fused sutures in the skull
• Abnormal pressure develops inside the skull

Other problems happen depending on which of the joints grow together. For example, one type of fused suture may cause a baby's face to appear slightly twisted.

Craniosynostosis Diagnosis

Craniosynostosis usually is present when your baby is born (congenital). But in mild cases, you and your doctor may not notice it right away. Doctors usually identify craniosynostosis in the first few months of life.

When your baby is born, the doctor will feel their head during a physical exam. The shape of your child's head will help the doctor tell which sutures have grown together. The doctor will most likely measure around your baby's head. This may be all your baby needs for diagnosis.

If your child's craniofacial team thinks your child has craniosynostosis, they will recommend a CT (computerized tomography) scan

 of your child's head. A CT scan is an X-ray procedure that takes a cross-sectional view of the body, which is enhanced by a computer. The timing of the CT scan will depend on your child's age, diagnosis and when surgery might be performed.

Surgery for Craniosynostosis

Surgery to correct craniosynostosis involves reshaping your child's skull. 

Often, this means open surgery. Some babies may have a minimally invasive procedure instead, called endoscopic strip craniectomy.

Open surgery

The neurosurgeon makes a cut (incision) across the top of the head. (Usually, the scar is covered completely by your child's hair within months of the surgery.) Then the neurosurgeon and a plastic surgeon work together to reshape the skull.

The neurosurgeon on the team removes the affected suture. Then, the craniofacial plastic surgeon shapes the skull bones into a more normal shape. The new shape is held together by plates and screws while the bone heals. The plates and screws are made of a special material that breaks down and dissolves completely in one or two years.

If your baby has simple (single-suture) craniosynostosis, they may need only one surgery. Children with craniofacial syndromes that cause craniosynostosis often need more than one operation to fix the problem.

After the operation, your baby will probably stay in the intensive care unit for one to three nights before moving to the regular hospital room. Babies usually stay in the hospital three to five days.

If the sagittal suture is the only suture that needs repair, surgery takes place when your baby is less than 4 months old. If other sutures need repair, we operate when your baby is 6 to 12 months old.

Endoscopic strip craniectomy

Your baby may have another option if only their sagittal or lambdoid suture is fused. This option involves taking out a strip of bone along the top of the skull through small incisions. After the surgery, your baby wears a helmet for at least three months to mold their head to a more normal shape.

Some families prefer this choice instead of open surgery. It may mean:

• Less scarring
• Less bleeding, so less chance of a blood transfusion
• Less time in surgery
• Shorter hospital stay

A mother's intuition...

I'm sure you have heard that a mother's intuition is a very powerful thing.  I had always heard it before becoming a mom, and am a firm believer.  ALWAYS trust your intuition, parents - it is how we learned of Mason's diagnosis.  More on that in a bit...  I should start from the very beginning and will get to the part about intuition and where it plays a role in all this.  

Mason was born on August 10, 2013 at 3:38 in the afternoon.  His delivery was fairly easy, and I was thrilled to be able to have the VBAC (vaginal birth after cesarean) that I had dreamed of since learning of our pregnancy with Mason.  He was a healthy 8lbs 1oz, and 20.25 inches long.  We immediately fell in love with our new little man, and began life as a family of 4.  It was clear from the very beginning that he looks just like his daddy.  I couldn't be happier about that - a "mini me" for each of us. :)  

Since Mason looked so much different than Easton, I just assumed his head shape was going to be like Clay's... he even had the cute little "ridge" where his eyebrows are, just like daddy.  I loved that he looked so masculine like daddy.  And what mommy wouldn't want a baby that is just as handsome as the man of her dreams?!  Mason's head had the normal cone head look after delivery.  It went down fast, and started to mold into its shape.  There were a few "lumps", but we assumed that his head was doing the normal vaginal delivery thing, and would shape correctly eventually - after all, we had a c-section baby before.

In the first 2 weeks after Mason's arrival, I didn't think much of his head shape.  I remember a conversation between Clay and me where we came to the conclusion that it would get to a normal shape and that it was probably just from the delivery and him being in the birth canal.  Right after the 2 week mark, I noticed a hard lump on the back of his head.  I had also noticed that his forehead was starting to protrude more - it wasn't the sweet little ridge like daddy's.  I kept my thoughts to myself because I didn't want to bring unwanted attention to my sweet newborn's forehead - for all I knew, that was just a characteristic of his appearance.  At that point, I had a nagging feeling that something wasn't right... I just didn't want to be a hypochondriac and sound like a crazy, worried, sleepy mommy of a newborn.  I just knew something wasn't right.  My intuition was really talking to me.

At his 1 month pediatrician appointment, I was ready to point out the lump and get some reassurance from the doctor that my feelings were wrong and that the lump was just from delivery.  I waited to point it out until the end of the appointment.  The doctor felt it and felt around his head and said that he thought "his suture might have closed a little early", and that he wanted us to see a specialist to be sure.  I honestly didn't get too nervous about this at the actual appointment because I was just feeling relieved that I wasn't making stuff up in my head about the lump.  We were told that the referral would be processed to see the Craniofacial doctor at CHOA (Children's Healthcare of Atlanta) at the Marietta location.  We went on our happy way home after that.

Once home, I had a very uneasy feeling about everything, and my intuition was kicking in once again.  I did what most any person in this technologically advanced day and age would do - I started researching online.  It didn't take long to figure out what Mason's condition was.  The pictures of the baby's heads looked just like Mason's, and it all made sense.  I showed Clay what I had found, and it was very clear to us that Mason has Craniosynostosis.  Of course, Clay didn't want to jump to conclusions, and did his best to talk me out of thinking the worst (sweet, loving husband for trying to calm my worried heart).  That night was a very sleepless night for this mommy.  I wanted to call the pediatrician right away and get the referral process sped up and ask him if this was his suspicion on the diagnosis on our sweet baby boy (all of our research was done after hours).   

I called the doctor's office the second it opened, and requested for the doctor to call me ASAP.  When he called back, I explained my research and asked him if he thought Mason had Craniosynostosis.  He confirmed that was his suspicion.  He promised to speed up the referral process so that we could get the answers and information we longed for.  I hung up the phone and started bawling my eyes out.  Even though his diagnosis hadn't been confirmed by a specialist yet, I knew in my heart that we were facing a huge surgery for our newborn - every parent's worst nightmare.

The referral process is cruel, let me tell you!  Mason's pediatrician had initially told us that we would need to see a Craniofacial specialist.  Upon further research, I found that he actually needed to see a neurosurgeon.  I called the referral person at the office, and she confirmed that we didn't need to see the Craniofacial specialist.  She promised to fax over the referral information to the CHOA neurosurgeon's office right away.  We tried to be patient, but these worried parents just couldn't wait around doing nothing!  I called the neurosurgeon's office, and they had never received the paperwork.  I called back the referral person and relayed that information.  By this time, it was Thursday, and we knew how miserable we would be going through the weekend with no appointment set.  I called the CHOA contact again.  She explained the process to me: paperwork sent in by referring doctor, reviewed by one of the neurosurgeons (they only review new files 1 time per week!), and then the neurosurgeon determines when they want the appointments set for.  I was told during the waiting process, that sometimes it speeds up the process if you have a CT scan prior to the initial visit, so the doctor can confirm the diagnosis.  Upon telling the referral lady at the office that we were open to this, she promised to talk to Mason's doc and call me back.  Thankfully, the doctor agreed with me that we should go ahead and order the CT scan.  We were called on Friday, and we thankfully went into the weekend knowing we would be seen the following week for the CT scan and finally get some answers.

More to come later...