Baby boy Keenan update 5-29-08

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Well, we had our first visit to Doernbecher Children's Hospital in Portland on Wednesday (5-14). We met with the Nurse Practitioner who will coordinate all of the baby's care and treatment with all the different doctors and therapists. Her name is Lisa Crupi and she is with Doernbecher's cleft palate and craniofacial program. We liked her a lot. Here are the major things we learned from Lisa:


- Ultrasound is not a very exact way to diagnose, so they don't recommend we get more scans to try and figure out the degree of cleft in his palate. She thought we should plan on that the baby has a cleft palate, and we'll just have to see how he actually arrives. All the things they told us will happen are based on the assumption he has a bilateral cleft lip and palate (bclp). Here is a website with lots of photos of cleft affected babies pre and post operative so you can familiarize yourself with what a baby with a cleft looks like. http://www.cleftadvocate.org/gallerya.html Since there are several types of facial anomalies on this site, just scroll down to look at children with "bclp" next to their names.


- Given we just won't know about his palate until he is born and the fact that some babies with cleft palate have airway issues, we are going to have the baby here at Sacred Heart Medical Center in Eugene. Matt and I moved our family from Portland to Eugene almost 4 years ago so that he could open an office here for his firm, KPFF Consulting Engineers who have done all the civil engineering work for the new hospital. The ironic thing is that the new hospital opens August 10th. Two days after my due date. Since Rohan was right on time and Pearl 10 days early, we are not expecting to get to have the new fancy hospital. You can check it out here: http://www.peacehealth.org/Oregon/News/Facilities/default.htm


- Although he may be able to nurse in some way (say for comfort) we should plan to pump and make sure he gets his calories via a feeding method that works for cleft palate babies. Lisa recommends the Medela "Special Needs" or Haberman Feeder. She gave us one and showed us how to use it. Good news! The Medela breast pumps and feeders are BPA free. Whew! What a relief.


- My OB will prescribe me a hospital grade pump which are supposed to be best, and my insurance should cover it. We meet with the lactation consultant at Sacred Heart on June 18th to find out more about troube shooting feeding issues and getting a good pump. Those who know me well know that breastfeeding has been very important part of my parenting with Rohan and Pearl so you can imagine I am very sad at the prospect of not being able to have this relationship with our new baby. The most important thing is that he get breastmilk, so I'm glad to find out that there are online support groups for women who must exclusively breastfeed.


- Based on recommendations from several people, we chose the surgeon who will do the lip and palate repair. Her name is Anna Kuang.


- Doernbecher is one of a half dozen centers in the country who have available an orthodontic procedure called Nasoalveolar Molding (NAM). It is a relatively new procedure, so not a lot of research is available, but it is supposed to close the gap of the lip and palate clefts before surgery and improve the shape of the nose over older methods. We are happy that it is a non-surgical procedure, a lot like an orthodontic retainer. The Dr. who does this procedure is named Dr. Judah Garfinkle. We will have an appt with him on June 23 to hear his presentation on NAM.


- Usually, the NAM needs to be adjusted weekly, so during that time we will be making lots of trips to Portland.


- The NAM device may be cutting edge and relatively painless to the baby, but it is pretty intense looking. Here are photos of babies with the NAM. If you plan to spend time with us, you should check them out. http://www.cleftstories.com/cleft-lip-palate-archives/nam-gallery-2/.


- So our baby will wear the NAM 24 / 7 until his first surgery, the lip repair, at 4 - 5 mos.


- Babies with cleft palate usually have chronic ear infections because the muscles of the in tact palate are essential for proper Eustacia tube function. Most doctors recommend tubes as a preventative measure early on, but at Doernbecher the ENT believes tubes are most effective after palate repair. We are relieved we'll have a whole year to try alternative methods to relieve his ear pain before he gets tubes. The fluid in the ears can cause hearing damage, so regular hearing screenings are part of the care at Doernbecher.


- The second surgery will happen at one year. It is the palate repair. They will also put tubes in his ears at that time.



- I don't know much about this yet, but speech problems are also a concern, so speech screenings start around 8 mos.


- Some kids need a palate lengthening surgery around age 4 or 5 in order to make all the normal speech sounds.


- If his cleft is complete (goes through the gums in front), he'll probably need a bone graft so his permanent teeth can properly root around age 7.

Whew!! I think that is a good recap for now.