About Our Newest Family Member

Our son, Evan, was born with a unilateral cleft through his lip and gum on the left side of his face and a bilateral cleft through his hard and soft palates.  Basically this means he has one cleft through his lip/gum, and both sides of his palate are cleft.  For those not familiar with cleft lip/palate, I’m posting this blog to answer a few (basic) questions.  At the end there will be a short list of things we are thankful for in this situation and things for which we’d really like your prayers.

The cause of cleft lip/palate is unknown: it could be due to environmental influences (e.g. a lack of vitamin B12 during pregnancy) or due to genetics.  In our case, both Mark and I have a family history of cleft lip/palate, so Evan’s cleft is most likely genetic.  A cleft occurs during the formation of the face: basically, the human face forms from the outside in, and a cleft is just a place where things didn’t meet when everything closed up.  Since the face is formed during weeks 6 and 7 of gestation, a cleft will happen at this early point.  Cleft lip/palate is pretty easily repaired and will not cause any major long term issues.  The main concern with cleft babies is early in their development: most do not eat well (they cannot get adequate suction to nurse or to drink from a regular bottle and special bottles are necessary to feed, and sometimes even that takes a while), a cleft palate will interfere with early speech development (which can be fixed with speech therapy), and cleft babies are more prone to ear infections/fluid behind their ears, so many have ear tubes at a young age.  Since a cleft is a midline issue, there is concern for other, internal organs (e.g. the heart, kidneys, etc.).  A cleft lip can be a sign that internal organs are not completely formed (this happens in about 30% of babies with cleft lip/palate).  For more information on cleft lip/palate, you can check out www.cleftline.org.

We are so thankful for Evan in general, but we are especially thankful that his internal organs seem to be OK.  We’ve been to a pediatric cardiologist twice to check on his heart and its growth; everything is working well and normal.  He has had x-rays of his lungs and an ultrasound of his kidneys and they all are functioning very well and normally (the ultrasound technician said his kidneys were “beautiful”).  Despite his cleft palate, Evan is eating like a champ and gaining weight and growing at a good, normal rate.  We are also thankful for the little “helps” God has put in our lives:

•  Every nurse we had at the hospital when Evan was born, and even at the Cardiologist’s office, had worked with cleft babies in neonatal units before and were able to give us advice and help when we needed it most.
• The University of Iowa hospitals are only 45 minutes away from us and have a nationally recognized cleft team; Evan has already met with them and we have a tentative plan of action for him.
• The main nurse we are working with at U of I has a daughter who was born with a bilateral cleft in her lip/palate, so she not only knows the medical side but can empathize and advise from the parental side too.
• On Christmas Eve, we ran into a family at our church whose son was born with a cleft; they don’t normally go to our church as they live out of town, but were there to meet with some family.  They were able to give us advice, comfort, and contact information in case we had any questions.

We would appreciate your prayers in the following areas:

• Feeding: because of the cleft, Evan is not able to nurse. I’ve been pumping breast milk and bottle feeding him (its time consuming, but well worth the benefits).  He is gaining weight (yay!), and eating well.  The two issues here are my ability to pump consistently with two children to care for, and that Evan is getting sores inside his mouth on either side of his cleft from the bottles, making eating a painful necessity; he eats, but he doesn’t like it.  The sores seem to be getting less painful for him, so it looks like this issue will fix itself soon. 
• Hearing: he has not completely passed a hearing test yet.  At the hospital, just after he was born, his left ear passed, but his right ear was too clogged with gunk to test.  When we went back for a second hearing screen, neither ear passed.  They believe that this is because he has fluid buildup behind his ear-drums (not uncommon in babies with clefts) and he may need ear tubes to avoid hearing loss.  We are unable to be certain that he can hear out of his right ear.  We go back for more hearing tests in a few weeks, so hopefully then we will be able get conclusive results about his hearing. 
• Surgeries: we do not have a specific date for any surgery at this point but here is the basic outline of what will happen when: 
•  Lip/nose repair around 6 months of age (approximately the end of May).  If he needs ear tubes, this will be the time when they put them in.  the timing here depends upon two things: Evan’s growth and how well the taping goes (taping is a process that involves putting a special tape across the face that will help pull the cleft together more, making surgery easier on both baby and surgeon).
• Palate repair around 12 to 14 months of age (again, dependent upon his growth).
• Bone graft for his gum when his adult teeth start coming in, sometime between five and nine years old.
• “Touch-up” surgery when he is in his late teens to make sure scar tissue isn’t interfering with his facial muscle development.
• Funding: while we have decent insurance, we aren't sure how much the surgeries will cost us out of pocket.  On a teacher's and freelancer's salaries, we're hoping we can save enough to afford these surgeries.  At this point, we are just trying to save up what we can in order to be able to pay for two major surgeries in one year.

All that said, Evan is such a great little guy and a joy to have in our family.  We greatly appreciate your prayers for him!