Yankees Catcher, Jorge Posada, on “The Beauty of Love”

This week’s People magazine had an excerpt from Yankees catcher Jose Posada and his wife Laura’s new memoir called The Beauty of Love. In it the Posadas talk about their son Jorge Luis’s battle with a congenital skull condition called craniosynostosis. Diagnosed shortly after birth because progressively worsening asymmetry of  his head and face , Little Jorge Luis, now 10 years old, has undergone eight surgeries to reshape the deformities, and has at least one more surgery in the future. The Posada family has set up a foundation, The Jorge Posada Foundation, who’s purpose, according to their website is:

“to reach out to families in need, whose children are affected by Craniosynostosis, and provide them with emotional support through its family support network; provide financial assistance to underwrite a portion of the costs of initial surgeries in its partner medical centers.   The Foundation also strives to create awareness about the condition through events and through funding other educational outreach efforts.”

The infant’s head:

The skull of an infant is made up of free-floating bones separated by fibrous tissue called sutures. Larger sections of fibrous tissue at the front and back of the skull are called fontanelles–  commonly known as “soft spots” on a baby’s head. This arrangement allows the infant’s head to pass through the birth canal and also enables the skull to grow with the brain in early infancy. As the brain grows, these bones are pushed apart, and new bone forms in the seams . The shape and location of these bones enables the head to expand in several directions — front-to-back as well as side-to-side.


What is craniosynostosis?

Craniosynostosis occurs when one or more of the suture closes before the brain has stopped growing. The early closure of a single suture restricts the growth in that part of the skull and promotes growth in other parts of the skull where sutures remain open. This results in an abnormal shape of the skull, but does not prevent the brain from expanding to a normal volume. However, if many sutures close prematurely, the skull cannot expand to accommodate the growing brain. This can leads to increased pressure within the skull and impaired development of the brain. It is unknown what causes most cases of craniosynostosis, although a person’s genetic background may play a role. The hereditary form often occurs with other defects that can cause seizures, diminished intellectual capacity, and blindness. Genetic disorders commonly associated with craniosynostosis include Crouzon, Apert, Carpenter, Chotzen, and Pfeiffer syndromes.

There are 4 main types of Craniosynostosis:

Plagiocephaly (unicoronal synostosis)

Plagiocephaly is the most common form of craniosynostosis. It occurs in approximately one out of every 2,500 births. Plagiocephaly involves early fusion of either the right or left side of the coronal suture, the suture that extends from each ear over the top of the head to the fontanelle. The forehead and brow of a child with plagiocephaly look as if they have been pushed back or flattened because the forehead and brow have stopped their normal growth.

Positional plagiocephaly is the most common cause of plagiocephaly. This is not caused by unilateral synostosis, but rather by sleeping in one position. The part of the skull that is dependent (in one position) tends to flatten out. Usually no intervention is needed. This is frequently seen in infants put on their back to sleep- the back of the head may flatten somewhat- this is temporary and improves with time.

Brachycephaly (bicoronal synostosis)

Brachycephaly, which means “short headed,” occurs when the right and left coronal sutures close prematurely. Brachycephaly results in an abnormally broad head with a high forehead. It is often associated with other craniofacial abnormalities, including Crouzon syndrome, Apert syndrome, Pfeiffer syndrome, and Saethre-Chotzen syndrome. It also is associated with Down syndrome (trisomy 21).



Trigonocephaly

This type of craniosynostosis involves fusion of the metopic suture that runs from the top of the head toward the nose, which can create a ridge running down the forehead and gives the front of the head a wedge-shaped effect. The eyes also may be close together.



Scaphocephaly (sagittal craniosynostosis)

This early fusion involves the sagittal suture that runs from front to back on the top of the skull. The result can be a long, narrow skull.



Symptoms of Craniosynostosis:

* Absence of the normal feeling of a “soft spot” (fontanelle) on the newborn’s skull

* Disappearance of the fontanelle early

* A raised hard ridge along the affected sutures

* Unusual head shape

* Slow or no increase in the head size over time as the baby grows

For more information, including information about treatment, click here to go to the Resounding Health casebook on Craniosynostosis.

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Mark Boguski, M.D., Ph.D. is on the faculty of Harvard Medical School and is a member of the Society for Participatory Medicine, "a movement in which networked patients shift from being mere passengers to responsible drivers of their health" and in which professional health care providers encourage "empowered patients" and value them as full partners in managing their health and wellness.

3 Comments

  1. Kim Mussetter

    September 19, 2010 at 4:28 pm

    I missed this article but caught the “update” in Sept 20th issue of People. My breath stopped short. My son was diagnosed with craniosynostosis 29 years ago and no one had ever heard of it before. I had a massive hemorrhage 15 minutes after his birth that no doctors could give me reason for. My veins collapsed and it was hours once they found a vein that would hold a needle before the numerous units of blood they fused into me stayed. After it was all over my doctors told me there would be no lasting effects. “You either die or you’re fine” Dr. Wm Miller told me. I left the hospital 3 days later with my beautiful son. Oh what a perfect head he has the hospital staff raved, such a perfect little baby. (of course his head did not mold to the birth canal during delivery and the force ruptured my artery) – It wasn’t but a week before my gut began to tell me that something was terribly wrong with my perfect little boy (my third child). He had chronic ear infections and was at the hospital or in the doctors office almost every day the first couple of weeks of his life. I remember telling myself that I was being ridiculous, surely with all the doctors he was seeing, one of them would make mention if they thought anything was wrong. When Nick was finally able to go in for his first “well baby” visit at one month, I again waited for our pediatrician to do all his measurements and when he pronounced Nick perfectly fine I held my breath and objected. There’s lots more to my story but after insisting on a skull xray, then being told there was indeed a “cosmetic” problem, insisting on seeing a pediatric neurologist, we were told that Nick actually had 3 sutures fused and if he didn’t have surgery there would be irreversible consequences. It was two more months while we waited for Nick to be well enough to undergo surgery and all the while we had to sit back and watch his brain protrude over his eyes and ears where the skull was not fused. – Nick had the surgery but the nightmare wasn’t over. The public stares, the kids teasing and the physical side affects of this disorder have affected Nick his whole life I believe. Our surgeon Dr. French told me, kids that survive this disorder are real fighters, stronger than most, but it has been a struggle. I feel lucky today. Nick is doing well for the most part but I would love to learn more about long term affects on these kids. Frankly, it’s exciting to be able to share my story. Until now, there was no one I had come in contact with that would understand.
    Thank you and I wish the Posada family my very best! If their little boy is as strong willed as my Nicholas, parenting will be a special challenge, but I wouldn’t trade his spirit and compassion for anything.

    • Michal

      July 15, 2012 at 8:56 pm

      Hi, I found your story really interesting–I had a baby boy in a home birth in January and I also had massive hemmorhaging and a baby with a fused metopic suture. Luckily my midwife was able to stabilize me. I was wondering have you had subsequent pregnancies and did you also suffer from hemmorhaging and babies with craniosynostosis? Thank you so much for the info!

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