Playing Catch Up

Wow, where have the past 6 months gone?  Let’s rewind a bit.

As we awaited the birth of our son in May, we finished having consults with each of the cleft teams in the area. We decided on a team, INOVA Fairfax. Though all of the teams are wonderful choices, this was the right fit for us and our son.  We had consults with the plastic surgeon as well as the orthodontist on the team and felt really good about both of them. We were told to expect the most contact with these two doctors within the first year. The other doctors on the cleft team would have more involvement later on. We were told that our son would likely be a good candidate to wear the NAM (nasoalveolar molding). As mentioned in my last post, teams may use a presurgical treatment to prepare the baby for complete lip repair. Because we were expecting our son to be born with a bilateral cleft, we knew the NAM could really help us before the time of surgery. INOVA was the only team working with an orthodontist who specializes in the NAM.  We might be looking at an additional surgical procedure if we opted not to go with the NAM.  We were also in contact with the cleft team coordinator and she was incredibly resourceful. We met with her prior to delivery and she answered all of our questions and gave us some sample bottles to try.  Our baby would need to use special bottles in order to feed properly.  This was so reassuring because we were able to test out the bottles ahead of time to figure out how to use them correctly.

As the days passed while we were waiting for our son to arrive, there was so much to worry about.  We tried to be as informed as possible. We researched, spoke to our cleft team, and joined support groups.  Having a support group has been one of the most reassuring parts of this whole journey.  It has given us a glimpse into what lies ahead for us in the next phase of this process.  We have been able to reach out to people who have been in our shoes and fully understand what we are going through.  It gave us so much hope to hear others’ stories about how they have persevered through some of the hardships that we are sure to encounter.

On May 18th, Ethan entered the world and stole our hearts.  All the worry we had melted away when we saw his sweet face for the very first time.  He was beautiful and he was ours.

Cleft Team Consults

It seems like the doctor appointments never end lately, but I guess we better get used to it. Between monthly ultrasounds at the high-risk OB, every other week visits now at my regular practice, and cleft team consults, it has been a very busy time for us.  I don’t know how we would do it all if I was still working full-time.  It would mean taking a lot of time off.  Eric has been wonderful with accompanying me to every ultrasound and all the cleft team consults.  His work has been very understanding - they allow him to put extra time in on nights and weekends to make up for time lost during these appointments.

Baby Boy still has 11 weeks to go before his due date, but we’ve had a lot of opportunity to prepare ourselves for what is ahead.  We feel so fortunate to have an early diagnosis of cleft lip and palate so that we can interview cleft teams in our area and make the best decision for our family.  I think getting over this hurdle will be one way to greatly ease our nerves.

There are three cleft and craniofacial teams located in Maryland, DC, or Virginia and all of them have outstanding reputations.  We have met with all three teams (though we still have one more surgeon to go as there are two located at Children’s).  Each team talks highly about each other.  They have told us that we can't go wrong with any team.

Here is a summary of the differences between each:

Johns Hopkins (Dr Redett)

Hopkins’ typical approach is to do a 2 stage lip repair.  Lip adhesion is done around 3 months of age - this surgery is a somewhat temporary procedure. It is meant to bring the skin closer together and lessen the cleft so that the skin is better prepped for the definitive lip repair.  The second lip surgery would be completed around 6 months.  The palate is then scheduled for repair around 10 months.  

Lip Adhesion and Lip Repair at Johns Hopkins

The Hopkins team is open to us working with an orthodontist in McLean, Dr Maull, who happens to be a former member of their team but is now with the Inova Cleft Team.  The benefit with seeing Dr. Maull is that she is trained to use a special orthodontic pre-surgical device called a NAM (nasoalveolar molding).  She is the only orthodontist in the area who does this technique.  Hopkins doesn’t believe NAM is necessary to achieve great results.  Use of the NAM would require weekly visits to Dr. Maull and daily re-taping of the device which we would do ourselves.

Children's National (Dr. Oh)

Latham Device

Dr. Oh and Dr. Boyajian both are members of the Children’s National team.  We can decide which surgeon to work with if we go with them.  We have met with Dr. Oh thus far, and his method is to first, surgically implant a Latham device in the roof of the mouth at 2 months of age.  We would have to turn a screw in our baby’s mouth daily and see Dr. Oh bi-weekly for adjustments.  The definitive lip and nose repair would then be done at around 3-5 months, and the palate repair between 10-12 months.

Inova Fairfax (Dr. Baker)

NAM Device

Within the first 2-3 weeks of life, we would meet with Dr. Baker and Dr. Maull to determine if our baby is a good candidate for the NAM device.  Bilateral babies typically are, so we would likely go that route if we chose Inova.  Unlike the Latham device which is surgically implanted, the NAM is taped into place daily.  We would visit Dr. Maull for weekly adjustments of the NAM until lip repair around 3 months. Palate repair is done between 6-12 months of age.  Based on recent research, Dr. Baker believes that doing the earlier palate repair is beneficial to speech development.

One obvious and significant difference between these groups is the pre-surgical method each uses.  It is hard to say whether one is better than another.  I have heard from many moms of bilateral babies that the NAM was particularly effective for their child.

Some benefits of NAM:

• helps close the cleft
• decreases the amount of surgeries needed (both Latham and lip adhesion mean 3 total surgeries before age 1)
• decreases need for orthodontic work later on
• can help with feeding
• aligns premaxilla (the skin between the two clefts)
• pushes back protruding premaxilla and gums
• extends the columella (skin between the nostrils) over time - helps surgeon achieve a natural shape at repair
• shapes the nose with stents

It is worth mentioning that there are other surgical procedures down the road that we are looking at - 4-5 years, and 7-9 years, 16-18, and possibly as a young adult.  But it is honestly hard to think about those at the moment.

I’ve been in touch with other families who go to each of these teams and they all rave about each one.  We are lucky to have access to all three of them - it wouldn’t take us longer than an hour to drive to DC, Baltimore, or Virginia (as long as traffic cooperates).  So many other families have to travel hours to visit their cleft team. Our last consult is scheduled for next week.  We hope to make an official decision about a team afterwards.

Thank you for keeping us in your prayers.  This hasn’t been the most traditional route for preparing for a new baby, but what better way to spend our time than to ensure our precious boy will have the best care possible?  We cannot wait to welcome our little guy into the world in the next few months!