Eli Update: The Surgery

By | 8:24 AM 3 comments
We have gotten a lot of "what exactly is Eli having surgery for" kind of questions and so, I thought I'd give a thorough explanation for those of you interested. For those of you not interested...I give you permission to stop reading now.

Eli has severe plagiocephaly, which is a fancy way of saying he has an asymmetrical head shape.

Here is a good picture that shows the distinction between a "normal" head shape and the shape of the head of someone who has plagiocephaly:

Plagiocephaly can be caused by a number of reasons:

1) constrictive intrauterine development
2) trauma at birth
3) premature fusing of the skull bones

But it is most commonly caused by babies laying in one position (on their backs) for too much time. Since beginning the back to sleep campaign the incidence of plagiocephaly has increased dramatically.

Most cases of plagiocephaly are caught early in america, usually in early infancy and treatment is just having the parent make sure to reposition their child throughout the day. For a head that doesn't respond to this, sometimes a baby is fitted with a positioning helmet. Generally this is only effective for babies 18mos or younger as their skull bones are still pliable.

In Eli's case, he was 3 when he came to us and his asymmetry is extremely severe. To give an example of this, for those of you who haven't seen him in person (because it doesn't translate much in photo's) the Journal of Craniofacial Surgery defines "severe" plagiocephaly as for those who have more than a 2 cm difference. Eli has almost a 4 cm difference. Because of his age and the fact that the skull bones are too hard, putting him in a helmet would be ineffective. Surgery was the only option available.

No. We don't have to do the surgery as his development isn't considered severely affected by his head shape. Hence the battles with the insurance company over their considering this a "medically necessary" surgery.

However, there is a lot of new research showing complications developing down the road for children with untreated plagiocephaly, including TMJ, vision and eye problems, migraines, as well as developmental delays. It currently affects his life in the fact that he cannot wear a bike helmet as the shape of his head skews the fit so that the straps end up coming across his cheek.

And, of course, we couldn't ignore the social impact of his condition on him. He already has a lot to overcome...being adopted and adopted into a white family, no less. If it is within our power to help him have to deal with one less issue, of course we want to do this for him.

Not to mention the hope we have that by allowing the left frontal lobe of his brain room to grow will only help him make up the gaps he does have in his developmental delays. And it certainly will not hurt anything.

His surgery will involve an ear to ear incision and the removal of his front and back skull bones to be "remolded" into a normal shape. It does not involve the doctors having to go past his brain barrier at all. It will take approximately 7 hours and we will be at Duke for 4-5 days.

Here are some specific ways you can pray for us:

1) That Eli will not be anxious.
2) A successful and uneventful surgery with a quick recovery for Eli.
3) Strength and peace of mind for Jeremiah and myself.
4) No pregnancy complications for me to distract us from taking care of Eli.
5) The safety and settled hearts of Ella and Ezra while they are away at Gramma's.
6) Protection from infection or "bumps" to Eli's head during the 1st critical 6 weeks post surgery.
7) That we would have opportunity to share the love of Christ with everyone we encounter as we go through this experience.

I know that God has a plan for Eli's life...he has gone through and overcome so much in his four short years. He is brave and a fighter and my hero.

Thank you for your prayers.
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Jeanne said...

Thanks for the update, Jen. Prayers for your whole family. If you need anything, (really, anything) let us know. Also a special prayer for your mom, settling in her new babies and worrying about her grandbaby. You and her are inspirations for so many of us. Godspeed for Eli's healing.

Thank you for the update, and I am praying for you all!

Stacie said...

Jennifer, I don't know you (although I feel like I do) but we have been home with our son about 2 months less than you have been home with Eli. I can only imagine how I would feel if we were going through this with Sammy and all that you must be feeling right now. God has given you everything you need to walk through this! I am committing to pray for you over the next several weeks.