Craniosyno-what?

boler

Our second child, Matthew, was born July 16, 2014 at Texas Children’s Pavilion for Women. He’s been a very happy, easy going little boy. He has always looked so much like his big sister, except for his head shape. Her head had been large and round, while Matthew’s was long and skinny and he had a deep furrow in his brow. We all commented on it but didn’t really think it was anything serious.

Matthew’s two-month doctor visit began like any other. He was thriving in all areas, but when Dr. Kristin Koush began to examine his head, she became concerned. After a quick feel of the top of his head, she calmly turned to me and told me she was going to refer Matthew to the pediatric neurosurgeons at Texas Children’s. She explained that she could not feel a soft spot on the top of his head and that his head was growing abnormally long and skinny. She then said, “I think he may have craniosynostosis.” It seemed like time slowed down and I could feel my heart beating in my throat. What had been an ordinary checkup had just turned very serious. Dr. Koush was very calm and explained to me that this was serious but not life threatening and that he needed to get in to see them as soon as possible. I left the office with my head swimming. All I could think about was neurosurgeons and craniosyno-what?? What the heck was that?

After a quick search of the pediatric neurosurgery website, I found Dr. Sandi Lam’s blog post, Craniosynostosis101: Commonly Asked Questions. Craniosynostosis is the premature fusing of the skull bones. The skull has numerous sutures and these are IMG_0018open when a baby is born so the brain can expand and grow. When the sutures prematurely fuse, it can cause an irregular head shape and, more seriously, it does not allow the brain adequate room to grow.

We soon met with with Dr. Lam at Texas Children’s. She was calm, confident and immediately put my husband and me at ease even though she had some serious news for us. She told us that his sagittal suture had fused (this is the suture that runs across the top of the head) and that it would require surgery to correct. She spent at least 30 minutes with us answering all of our questions and explaining in detail what the surgery would be like.

Because Matthew was so young, he was an excellent candidate for a less invasive endoscopic surgery. Dr. Lam and Dr. Laura Monson, a pediatric plastic surgeon, would work together along with a team of nurses and residents to create two incisions, lift the skin of his scalp and carefully remove the section of bone along the sagittal suture thereby creating a new large soft spot and allowing his head to expand sideways. The surgery would be followed by helmet therapy. Matthew would need to wear a helmet for 23 hours a day for 3-12 months post surgery.

We were scheduled to have surgery in 10 days. We came back a week later for a CAT scan, pre-operative blood work and to meet the entire craniofacial team. Everyone we met was friendly, optimistic, very knowledgeable and clearly understood that while Matthew was the one undergoing surgery, this was a whole family experience. They always took time to answer our questions and the whole process was well thought out and smooth.

On the day of surgery we arrived early in the morning and waited in the pre-op area we had visited a few days prior. We once again spoke with everyone on the team and met the anesthesiologists. We were extremely nervous, but everyone continued to put us at ease and we knew Matthew was in the best possible hands. During surgery there was an electronic board in the waiting room that updated us on his progress. There was also a nurse who travelled back and forth between the waiting room and the OR providing us with detailed updates.

Nothing could have fully prepared us for how Matthew would be in the recovery room. Our precious little boy was so swollen, he was almost unrecognizable. He was hooked up to many machines and for a brief time he was inconsolable. We were encouraged to hold him, kiss him and sing to him, and everyone assured us he was doing really well and the surgery had been a great success.

The first 72 hours of recovery were harder than the surgery itself. The wonderful nursing staff helped make sure Matthew’s pain was well managed and again reassured us endlessly that he was doing great. They never became annoyed by our questions. The surgeons, and even his pediatrician, visited us in the hospital.

By day four he had made an incredible recovery. The swelling had gone down and he latched back on to nurse. He smiled and began to return to his cheerful, easy going self. His head shape had changed dramatically, for the better, and he was still recognizable to us. He had the same sparkle in his eye and his smile returned.

A week after surgery we received his helmet and we were introduced to Jim at the Hanger Clinic. He saw Matthew every two weeks to make adjustments to his helmet. We looked forward to these appointments because we always left feeling reassured that our little boy was healing well and that the surgery had been a success.IMG_0236

Matthew progressed so well that he was released from helmet therapy after four months. We were anxious that this might be premature, but again, everyone took the time to answer our questions, addressed our concerns and assured us that he was ready.

Matthew is coming up on his first birthday. His head looks amazing and scars are barely visible. His head has maintained its new rounder shape. We will continue to have annual checkups with the craniofacial team. We are so grateful to everyone at Texas Children’s for both their exceptional medical care and their endless emotional support.

Facebooktwitterpinterestlinkedinmail

About Megan Boler, Mother of Patient

My husband Michael and I live in Houston with our two wonderful children Madeleine and Matthew. We are so grateful for the wonderful care both of our children receive through Texas Children’s Hospital and Texas Children’s Pediatrics
Posted in Guest Post, Neurology, Neurosurgery, Plastic Surgery

8 Responses to Craniosyno-what?

  1. Jamie Demeris says:

    Thank you for sharing this. He is such a handsome little fella!

  2. Carol says:

    Beautiful story, shade a tear!
    May God continue to help him.

  3. jennifer poarch says:

    Hi I know what your going through with your son my second son was born aith craniosyntosis andhas 3 head surgeries and hell be 8 this year. he had his first surgery at 6 months old and his last surgery was in 2011. I’m glad your son is doing better

  4. Rich says:

    I was excited to read your story on this. It is the first time I have ever read anything on it. I am 43 now but I had the same thing when I was a baby. My Mom has pictures of how my head was elongated before the surgery. She still remembers how stressful it was when she saw me with all the incisions on my head. I get comments when I get my haircut about my scar on my head so I think they do a better job these days. I also don’t think I wore a helmet afterwards. Good to see your boy doing so good.

  5. Beth says:

    My craniosynostosis was diagnosed when I was 2 1/2 weeks old. The surgeon and staff were amazing, as my mother tells me. For instance, the surgeon placed the incision longways at the middle top of my head so I would have a “natural”, centered part. The staff accommodated my mom’s insistence that she be allowed to administer my 2am feedings (my parents would make the drive every night while my oldest sister watched my other 2 sisters). It was a scary time for them, but an interesting experience none the less. I still have the bumpy scar which prompts a retelling of my story every time I get a new hairstylist. ;) I am now 37 years old with a “normal” head and 3 beautiful children!

  6. Gary says:

    My son was born with craniosynostosis almost 21 years ago and his head looked exactly the same. They performed the same operation on him when he was 4 months old. Unfortunately, the bone grew back in less than 3 months so there was no time for his head to reshape. At 16 months they operated again and disassembled his skull and put it back together with wire and screws. A month later, his head looked normal except for the scar. Today, no one can tell except when his hair is short which is all the time as he is a member of our military.

  7. Carreen says:

    My son had craniosynostosis in 1993 and is now 21. His two younger brothers were born without this condition. The operation was successful, and we are very happy to say my son just graduated from college with honors. The operation didn’t effect his learning. The helmet is something new, because our son did not need to wear one. It’s always scary when someone you love needs an operation especially a newborn baby. Thank goodness for doctors!

  8. Barbara Johns says:

    My son was born in 1977 and he also had the same issue. It was different back then and he was three months old when it was discovered while waiting in the waiting room for a routine visit. I was 18 years old and he was my first child. I was sent immediately to Shands Teaching Hospital in Gainesville Florida. After meeting with the neurosurgeon, he had surgery three days later. The surgery was similar,but much more invasive. He was cut from ear to ear and five bones were removed to give him room to expand. He spent two weeks in intensive care and about a month in the hospital. They did not have the helmet’s back then so he still has an elongated head, He has a very wide scar that runs from ear to ear, and as he gets older the scar has widened. He keeps his hair long and no one can tell that it has an odd shape or see his scar. He has graduated from college, married, and he has a two year old son.

Leave a Reply

Your email address will not be published. The * fields are required. Links are not allowed.