Cranial Synostosis Surgery and Other Updates

Sunday, August 26, 2007

It has been awhile since we've updated you about Caroline's upcoming surgery. In the last few weeks, C and I met for the first time with the neurosurgeon who will operate on C alongside the cranial plastic surgeon. The neurosurgeon expressed concerns about operating on Caroline in September because of her heart and lung problems. He stressed the surgery's seriousness - the need for blood transfusions due to blood loss, ventilation, long recovery, etc - and suggested that we think twice about doing the surgery in September.

He then talked with the cranial plastic surgeon about that, who said that we will postpone the surgery for awhile. He'll see us every month to check on her, consult with our pulmonologist and cardiologist, and from that, decide when the optimum time for surgery will be (sounds like it won't be until she's a year old, which is good and bad - good because we don't want her to have to go through that surgery any sooner than she has to but bad because the earlier we do it the more malleable her skull is).

We also met with another ENT, based on a referral from the pulmonologist because he believes that Caroline's low oxygen saturation is due to an upper respiratory problem, not something in her brain or lower respiratory system (we are still waiting on the results of a chest xray she did last week to confirm this).

The ENT examined her mouth and did a scope of Caroline's nose and throat (he put a little cord with a mini-camera on it through C's nasal passageway - she did not like that) and found that C does have two upper respiratory problems. The main problem is Caro's tongue is set high and far back in her mouth, so her tongue tends to fall back and cover her airway. This is caused because Caroline's head is more narrow between the ears than average anatomy. In fact, the only reason Caro can breathe without a trach (tube/machine inserted in the throat to allow breathing) is because she has a high-arch palate - this allows air to get in and out even when her tongue has covered up much of her airway.

The secondary problem is that she has laryngomalasia, a problem where her epiglottis(tissue that protects the windpipe or trachea) is not fully developed and is weak so the epiglottis tends to collapse and narrows her breathing passage. Both the tongue issue and the laryngomalasia are almost definitely also contributing to her eating problems.

The ENT believes that the main solution for these problems is time - he says that laryngomalsia goes away on its own in about 99% of kids and the tongue may lower and come forward as her anatomy matures and expands. The pulmonologist and the cranial surgeon also said there is a jaw surgery that can help with the tongue problem; they're going to keep that in mind as another option for her.

Obviously, we have copious amounts of information to absorb and decisions to make. I believe these doctors are very good and am glad they use caution to deal with Caro's health problems. We pray that they can draw the best conclusions for her based on the information they have.

B and I know that you pray for Caroline frequently, but, in the next few days and weeks, will you pray specifically that Caroline's doctors will have the insight to correctly identify her heatlth problems and the best solutions to deal with those problems? Will you also pray that B and I will know which medical treatments will be best for her and which to approve? I feel like the next month or so will be critical in that regard.

Thank you very much.


  1. Well, you have my prayers on behalf of the dr.'s but you also have my prayers of gratitude. Thank you for being so brave, honest, in tune and educated. You are the best mother Caroline could have!

  2. You know we send up countless prayers each day for the three of you, but we'll work on making those more specific. You and Bryce are our heroes--keep hanging in there! Love you all so much.

  3. I have not been on forever and I was so glad to see an update on what is going on with her and the surgery. You are all in our thoughts and prayers. I am so glad you have this blog and I can learn from your stength.


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