Baby Pierce : February 2013

Our first ultrasound was at 21 weeks and everything looked great and we also learned that we will be having another boy - yay!!!! Thursday, January 31st, we went to our 33 Week ultrasound and learned that our baby boy has a bilateral cleft lip and palate. If you are not sure what that is, please scroll down to read about it or go to this link: http://www.cleftline.org/parents-individuals/
Everything else looked normal and there is no indication that the clefts are associated with a syndrome, although there is still a chance that it could be syndrome related. The biggest concern is feeding. Until he is born, we will not know how extensive his cleft is nor will we know if he can be breastfed (not likely if he has a bilateral cleft lip and palate), bottle-fed with special nipples (what we are expecting), or require a feeding tube (a feeding tube is usually syndrome related).

Yesterday, Feb 8th, we went to speak with a pediatric plastic surgeon, and they explained the process they use, which helped us get a better understanding of what to expect.

1st week of life - examine baby, make a molding of his mouth, and put in a NAM (see picture below)

A NAM is used to help form the nostrils, narrow the gap in the hard palate, and most importantly lengthen the philtrum and outer lips in his first 3 months. All of these things contribute to an easier and better outcome repair for the child.

3 Months - Reconstructive lip surgery
Reconstructive nose surgery
Soft Palate Surgery (the palate in the far back)
Tubes placed in his ears (All of this will be done in one day. We will stay overnight with him at the hospital and should be home the next day.)
Here is a link to show before and after pics of surgery: http://www.kidsplastsurg.com/photo-gallery/results.cfm?Category=3

18 Months - Hard Palate Surgery
Replace tubes in ears (Another overnight in the hospital.)

6-9 Years - Hip Bone Marrow Removal Surgery (to pack in the space in his gum line for his permanent teeth to come in properly)
Orthodontic Braces

18 Years - Plasto-Rhino Surgery on his nose (hopefully his FINAL surgery)

There are other methods in repairing his clefts, and we will be meeting with other surgeons to decide which method we are most comfortable with.

We (Brock (35), Mischelle (30), Caden (9), Mara (8), & Brycen(1)) are all handling this news well. We are educating ourselves by reading online, looking at pictures, and meeting with specialists. We encourage all of our friends and family to do the same. We went through an appropriate wave of emotions, and we are expecting the many more waves to follow. We want you all to know that it is okay for you to share your emotions with us as well. We are not asking you to "be strong" for us. He is your grandson, nephew, cousin, or new friend, and we want you to know that it is ok... It is ok for you to be shocked, speechless, afraid, nervous, angry, sad, or whatever else it is you might be feeling. We know that he will look different, and we are trying our best to prepare ourselves for the 1st meeting when he is born. We also know that we already LOVE him soooo incredibly much and find comfort in knowing that he will be born into the most loving and welcoming family. We are very grateful to have each of you in our lives, and we know that he is already loved by each of you. Please feel free to ask any questions. We are very excited for his arrival and can't wait for everyone to see our beautiful boy!

What is cleft lip/cleft palate?

A cleft is a separation in the lip or roof of the mouth (palate). They can occur in anyone, but are twice as common in boys. Approximately 1 in 600 babies born in the U.S. has a type of cleft. Clefts are the fourth most common birth defect in the U.S.

Incomplete Cleft Palate