Update on Lydia

Monday was a big day of tests for Lydia.  She got two x-rays, an ultrasound, and a CAT scan (all of her head).

  Lydia before her CAT scan -- doesn't she look so tiny?!

We picked up all the results on Thursday and she was diagnosed with bi-lateral coronal craniosynostosis.  Craniosynostosis is a condition in which the sutures (area between the cranial plates) in the skull fuse prematurely.  If untreated, this could cause pressure on the brain.  From the CT scan, we can see that her two front sutures are fused (bilateral coronal).  Fortunately, it is treatable with surgery.  Through hours of research, we’ve been learning more about our options.

There are two main types of surgery.  One type is called cranio vault reconstruction and basically reconstructs the front half of the skull.  This surgery lasts between three and seven hours, requires an incision from ear to ear, results in quite a lot of blood loss, requires a blood transfusion, a 3-4 night stay in the hospital, and causes quite a bit of swelling in the face (usually the child doesn’t open their eyes for about three days).  The timeframe for this surgery is between 6 and 9 months of age.

The other option is called endoscopic craniectomy.  This surgery is newer and less invasive.  This surgery removes the fused suture and uses a helmet to help reshape the skull.  This surgery lasts between one and two hours, requires only two or more small slits, results in far less blood loss, rarely requires a blood transfusion, patients can usually return home the next day, and doesn’t cause much swelling in the face.  The timeframe for this surgery is as soon as possible, usually before three months.  However, this surgery requires the child to wear a helmet for up to 18 months that needs to be adjusted every few months.

So, two very different options.  There are only a few places in the country that specialize in these types of surgeries and only a couple that have long-term experience with the second type.  We had originally thought we would have the surgery done in Dallas, but they only do the first type of surgery.  Since the second type of surgery is far less risky and has had excellent results, we decided to try to find a place that does this type.  After more research we contacted San Antonio and have a tentative surgery date for mid-January. 

This gives us a little less than eight weeks to be in San Antonio.  Our next step is to find airline tickets to the States.  We also have lots of other logistics to figure out such as getting passports, figuring out what to do with our the house we’re renting in Soytown, finding a place to stay in the States, figuring out what to do for a vehicle, etc.

As of right now we’re not sure how long we’ll be in the States, but our current plan is to stay in Dallas and take some advanced linguistic classes which we were needing to do at some point anyway. 

As for us, we're doing pretty well.  We knew that this could be a possibility before Lydia was born, but it is still hard to think that our precious little baby having to go through this type of operation.  Although it’s been somewhat stressful these last few days trying to do research, getting tests done, worrying about the many unexpected expenses that we have ahead of us, and thinking about our different options, we realize that we have so much to be thankful.

We are so thankful to God for our precious, beautiful little baby girl, that the condition is treatable, that we have access to some of the best medical care in the world, that we noticed the condition in enough time to do treatment and that when treated there are no long-term problems.  We are so thankful for the support group we have around us – our family, our branch family, and our many prayer partners and friends.

We appreciate your prayers as we make decisions, figure out logistical details, and as the reality of this all sinks in.

When we found out Emily had a cleft palate, I was doing some reading online and came across a letter written by another parent with a cleft palate.  The gist of the letter was that God had chosen you to be this child’s parent.  That the child was not just their condition.  We thank God for entrusting us with being Lydia’s and Emily’s parents.  Please pray with us that we’ll be the best parents we can be for our two precious little girls.