Some folks wear their heart on their sleeve, as the saying goes...

2013-05-23 16:31:23 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.

Baby Jude appears to wear his heart on his skull. Jude was born with congenital skull deformations. Not just your traditional plagiocephaly (flattened head) but more of a midline deformation, with a divot at the top of his skull, along with some odd spots in the back of his head.

Combined, these lumps and bumps make his head  heart shaped.

At 6 months old, we were referred to the amazing Dr. Murthy at Akron Children’s craniofacial clinic, and we've remained frequent flyers there for a long time. We spent a good amount of time in CT, MRI and X-ray to be certain that these deformations were not dangerous for brain growth and development.

So far, his skull is misshapen, not dangerous. Jude carries extra cranial fluid around his brain, but not enough to require shunting or to be dangerous.

Jude’s head develops swelling in the oddest places, for no apparent reason. As Dr. Murthy says, “It’s just his head. Never seen anything like it.” And then he gives Jude a high five.

Dr. Murthy is amazing. He reshaped Jude’s skull to the very best shape it could become - with the help of a helmet or 2. Worn 23 hours per day, 7 days a week, for the better part of a year.

Dr. Murthy released Jude from his service in June of 2011 with a confident, “His head is lumpy and bumpy and heart shaped, but it’s not dangerous. And it’s as good as it’s going to get.  Watch for changes and call me when they occur.”

Fast forward to the past few weeks. Jude grew a “horn” at the very top of his midline deformation. There is no sign of injury, palpable swelling, or skin irritation. Not even a bug bite.

It looks like a horn.  After a few days of me noting it, his awesome OT at Akron Children’s Hospital noting it, his Summit DD team and then finally his father (who doesn’t do the medical thing all that well and rarely notices medical stuff) noting it, I decided to call Dr. Murthy’s office.

On a whim. I didn’t even know if they still had a file on him. Jude had not been their patient in over a year.

Here is where the awesome part comes in. Not only did the front desk team remember Jude, they got in touch with Dr. Murthy immediately and had me email the photo of the new bump.

In less than 2 hours, Dr. Murthy personally emailed me saying that it didn’t look like a “typical Jude bump” and he wanted to see Jude the next morning.  This is a craniofacial plastic surgeon of the highest training emailing me and making room in a busy, busy schedule to see his old patient. In less than 24 hours.

Incredible. Dr. Murthy gives incredible care.

We are still unsure what the horn is. We don't know if Jude is seizing at night and may have bumped his head, or if his skull is shifting around. Neither of those are good options to consider. If it’s cellulitis (a skin infection), that's not good either as Jude isn’t a good healer.

None of the "do not know's" are good options. But, what we do know is not only good; it's priceless.

We know that Jude is not in danger. He's showing no major neuro signs, outside of his normal neuro junk.

We know that  CT and/or MRI are on deck. I negotiated a “watch and wait” period of time with Dr. M. Docs who trust and work in conjunction with moms are the bees knees!

I know that a world class physician like Dr. Murthy is at the ready to care for my Baby Jude. I know that even with all the lumps and bumps, Baby Jude’s heart-shaped head is the sweetest I have ever seen.

And I know that ball caps are always in fashion if this new horn is here to stay!

Grateful, Prayerful & Hopeful

Read more about Baby Jude in the rest of Sarah’s blog posts.

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