Here are a couple of pictures of the NAM. These are from late August,so keep in mind the NAM has changed a lot since it was originally put in Emily’s mouth. Originally the NAM did not have the nasal stents. Also,the stents were much smaller. I wish now that I’d taken pictures of the NAM after each adjustment so that I could see the progression from when she first got it in on 4/21 to the present. I’m putting this post back in with the April posts but will link to it throughout the blog.

Top view of the NAM. This is the shape of the cleft in Emily’s palate.

Side view of the NAM. Look at those honking stents! They look like jelly beans now.

The hole in the center of the NAM is for airflow in case her nasal passages become obstructed, but the nasal stents actually help to open up her airway (another bonus of the NAM). The indentation down the center of the NAM fits over her nasal septum which runs down the center of her mouth. I’d originally thought her nasal septum was a piece of palate, but Dr. Grayson set me right on that. Emily has no palate tissue at all and so the nasal septum is exposed. There was a huge sore on her nasal septum when we first brought Emily into NYU when she was six days old. This was from her tongue rubbing up against the septum which is normally protected by the bony palate. The NAM protects her septum (yet ANOTHER bonus) and we haven’t seen any sores in her mouth really since the first couple of weeks she had the NAM.

In my previous post I mentioned that Jim, my husband, came up with a way of taping Emily’s prolabium that is much easier than what they showed us at NYU. We have been using this technique for months now (I’m back-dating this post) and I have decided to write a step-by-step guide on how to do this, complete with photo’s, for other parents who would like to try the technique.

Summary of technique: Take two rubberbands (elastics) and attach them to each other using a slip knot. Then fold a piece of Steri-Strip over the knot. If you cut one Steri-Strip into four pieces, then you can make four prolabium tapes. You will not be folding the STeri-Strip in half, but just fold it over enough on the knot so it is secure and leave a bit of Steri-Strip sticking up (with the backing on). This sticky part is what gets stuck on the baby’s prolabium. Here’s an illustrated guide.

Create the slip-knot using two elastics…

I use a pair of scissors to hold the first rubber band..

Then I slip the second rubberband throughthe first and loop it into a knot.

Once the rubberbands are knotted together, you can pull them across the scissors and just fold the tape over the knot.

Here is the end result on Emily’s prolabium. The part that’s sticking to her skin is not folded and so the Steri-Strip is still sticky. I put glue on her Prolabium to keep the tape from coming off due to saliva.

Jim and I chose to use the NAM for presurgical molding of Emily’s face prior to her lip repair surgery. There are several reasons for me, but first let me give you a NAM backgrounder.

NAM is an acronym for nasoalveolar molding device. The NAM was invented at NYU Medical Center by Dr. Barry Grayson, an orthodontist who has been working with children and babies with cleft lip and palate for many years. The NAM is an orthodontic device, similar in pricipal to a retainer, that is fitted to the shape of the baby’s mouth and held in via tapes and rubber bands. The NAM comes out as easily as a retainer does, and its primary purpose is to move the segments of the gums together and shape the nose prior to surgery. This made a lot of sense to Jim and I when we were researching how to treat Emily’s cleft. The NAM is particularly helpful when the cleft is bilateral because there is a lot more involvement of the nose and premaxilla.

Rather than redefine the entire process, here is a link to an NYU brochure about the device – nasoalveolar molding

Although work-intensive (as you’ll see if you read through this blog), here are the main reasons we chose to use the NAM.(Note: I have defined some of the anatomy I mention here below)

1) It minimizes the number of surgeries Emily will need in her lifetime. Presurgical molding means that things are where they should be (or as close as possible) before the surgeon even makes the first incision. The NAM also creates tissue where none existed (the columella), giving the surgeon more to work with. By pushing the premaxilla back into the mouth and straightening it out, Emily may not need a bone graft later in life. The idea is to get the gums, nose and lip done all through ONE procedure when she’s about six months old. This was a huge benefit to us.

2) We suspected (and were right) that the NAM would help Emily to eat. Without a palate, it is possible for her to eat with the special Pigeon nipples we use, but it takes more work. The NAM covers the entire roof of her mouth and provides lots of surface area for the nipple to do its work.

3) We would be very involved with her treatment prior to surgery. Rather than just handing our child over to a surgeon and hoping for the best, the NAM afforded us the opportunity to roll up our sleeves and really participate in Emily’s care. We were responsible for taping the NAM so that it applied constant pressure to her gums, cleaning it, ensuring it was in as much as possible and bringing her in for her weekly visits to the orthodontist for adjustments. This was a tremendously satisfying experience for me (I took her in for ALL of her weekly visits). I know that we did the best we could to give Emily the best repair possible, and that turned out to mean a lot when it came to acceptance of the situation.

4) The end result. I would be remiss in defining my reasons for the NAM if I didn’t mention that we hoped the NAM would give Emily a great looking repair. Like all parents we want the best for our child, and we hope the NAM will help her look as good as possible.

Here’s an examle of the anatomy that I mentioned above.

1. Columella – this is the piece of skin between the nostrils. Emily was born with almost no columella. The NAM has been stretching this skin for months now, creating about 6 mm of tissue where there was once barely 1 mm.

2. Prolabium – This is the piece of skin between the columella and the upper lip. We attach tape to this piece of skin each day, pulling it down while nasal stents push her nostrils up in order to stretch her columella.

3. Premaxilla – The segment of the upper gums where the first four teeth come in. In children with bilateral cleft lip, this segment of the gums juts out of the mouth and is often twisted at birth. The first job of the NAM is to push this back into the mouth and align her premaxilla up with the lateral gums in preparation for surgery. Emily’s premaxilla was fairly symmetrical at birth, but it did stick out of her mouth. It was inside her mouth and fairly straight within two weeks of wearing the NAM!

I am not a medical person, I’m just a mom. The above is my understanding of the NAM, but if you have questions I urge you to contact a cleft team in your area that uses the NAM. If there are none, call NYU at 1-212-263-5204 with any NAM-related questions.

The following is a progression of Emily’s progress with the NAM from birth to surgery in October 2004 when she was 5.5 months old.

Newborn……………………………….9 Days Old (pre-NAM)

…..9 days old…………………………..NAM week one

…..NAM week two………………….NAM week two

…..NAM week four………………….NAM week five

…..NAM week six………………….NAM week seven

…..NAM week seven………………….NAM week nine

…..NAM week 13………………….NAM week 16

…..NAM week 18…………………….NAM week 19

…..NAM week 20…………………….NAM week 21

…..NAM week 22…………………….NAM week 22

Post Operative Recovery Pictures

…..Recovery Day 1…………………Recovery Day 3

Here is a collection of kids who used the NAM either at NYU or elsewhere. All photos are published with the permission of their parents. If you want me to add your NAM baby, send me an email.

Ava G. – New York
Cleft: Unilateral Cleft Lip
Orthodontist – Dr. Brecht
Surgeon – Dr. Court Cutting
Hospital – NYU Cleft Lip & Palate Center – New York, NY

Newborn picture of Ava (notice there’s no nasal stent yet and her cleft is still very wide)


Ava with twin sister Alesia – you can see the NAM’s doing its job – Ava’s cleft is much narrower and her nostril has been shaped and moved over. Good work mom and dad!


Lovely Ava after her lip repair. She looks amazing!

Caitlyn – Atlanta
Cleft: Unilateral Cleft Lip
Orthodontist – Dr. Granger
Surgeon –
Hospital – Children’s Healthcare of Atlanta – Atlanta, GA

Caitlyn with her NAM – a very good picture of the NAM

Another shot of the NAM. She looks so cute and peaceful. Makes me want to take a nap.


A picture of Caitlyn without the NAM

Kaden – New York
Cleft: Bilateral cleft lip/palate
Orthodontist – Dr. Larry Brecht
Surgeon – Dr. Court Cutting
Hospital – NYU Medical Center – New York, NY

Kaden’s newborn picture

Kaden wearing his NAM. (and look at those very cute cheeks!!)

Kaden’s wide smile, without the NAM

Reid – Cleveland, Ohio
Cleft: Bilateral cleft lip/palate
Orthodontist – Dr. Gerald Ferretti
Surgeon – Dr. Arun Gosain
Hospital – Rainbow Babies Hospital – Cleveland, OH

Reid’s newborn picture. That’s a feeding tube in his nose.

The world’s biggest smile can be seen around the world’s biggest NAM. So you see, NAM babies do smile!

Reid during the molding process without his NAM.

Reid recently had his surgery – I’ll post a post-op photo here shortly.

Nolan- Portland, OR (Added 6/4/08)
Cleft: Bilateral cleft lip/palate
Orthodontist – Dr. Judah Garfinkle
Surgeon – Dr. Anna Kuang
Hospital – Doernbecher Children’s Hospital – Portland, OR

Nolan without the NAM

A very good shot of Nolan wearing his NAM, all taped up

Nolan, Post-surgery and post-NAM. There are no words to describe his cuteness.

Joshua- Denver, CO (Added 6/4/08)
Cleft: Bilateral cleft lip/palate
Orthodontist – Dr. Jennifer Takesono Yu & Dr. Meredith Harris
Surgeon – Dr. Gregory Allen
Hospital – The Children’s Hospital in Colorado – Portland, OR


Joshua’s very sweet newborn picture.


Joshua with his NAM. That’s a lot of tape on such a tiny face!

Joshua now! Yes, he is a cutie!

Kate – Eden, NC (Added 4/17/08)
Cleft: Bilateral cleft lip/palate
Orthodontist – Dr. Martha Ann Keels
Surgeon – Dr. Jeffrey Marcus
Hospital – Duke University Health
Mom – Ashley – Send her an email at katesmom1007 aim.com

Kate, without her NAM

Kate, with her NAM (and dressed as a pumpkin)

Ian Timothy - Atlanta, GA (Added 2/13/08)
Orthodontist – Dr. Granger
Surgeon – Dr. Williams
Hospital – Children’s Healthcare of Atlanta at Scottish Rite

Ian’s newborn picture – he was born with bilateral cleft lip and palate

Ian at 3 weeks old – pre-NAM, but his prolabium is taped down here.

Ian with his NAM at 14 weeks old. His lip surgery is scheduled for April 1st, 2008.

You can read more about Ian on his blog.

Roger- Denver, CO (Dr. Meredith Harris/NAM & Dr. Stacey Folk/surgeon – Children’s Hospital, Denver)

Roger was born with bilateral cleft lip & palate – here he is without the NAM.

Roger with his NAM.

Roger’s gorgeous smile 12 days post op.

Rylee – Virginia (Dr. Maull – orthodontist/Dr. Dufresne – surgeon)

Rylee – pre-nam (That’s her premaxilla sticking out of her mouth)

Rylee all taped up – notice her premaxilla doesn’t stick out anymore – that’s one of the NAM’s main purposes, to push that back into place prior to surgery.

Rylee’s adorable new smile.

Zachary – New York (NYU – Dr. Brecht (orthodontist)/Dr. Cutting(surgeon)

Newborn – Before the NAM

Zach with his NAM

Handsome Zach post lip repair

A great new smile!

Michael – New York (NYU – Dr. Grayson/Dr. Cutting)

Michael with his NAM

Gorgeous!

Sydney – Virginia (Dr. Maull – orthodontist/Dr. Dufresne – surgeon)

Sydney at 2 weeks old

Sydney with her NAM

Sydney’s beautiful new smile.

Jamie – North Carolina – NYU – Dr. Brecht (orthodontist)/Dr. Cutting (surgeon)

Jamie Newborn

Jamie with His NAM

Jamie’s handsome face.

John Jr. – Georgia – NYU – Drs. Granger and Grayson (orthodontists)/Dr. Cutting (surgeon)

John Jr. Newborn

John Jr. Day 1 with NAM

John Jr. all taped up with nose stents

John Jr., one week post-op with tape over his lip – wish we could get a peak under that tape!

Ryan – New York – NYU – Dr. Grayson (orthodontist)/Dr. Cutting (surgeon)

Ryan newborn (wearing tape prior to NAM)

Ryan with his NAM

Ryan about one month post-op. Look at that PERFECT nose.


Ryan looking irrisistable.

Natasha – New York – NYU – Dr. Grayson (ortho)/Dr. Cutting (Surgeon)

Natasha is the first of what I hope will be many older kids featured in the NAM gallery. Born with bilateral cleft lip and palate, she lives in NY and has been a patient of NYU for her entire life.


Natasha and her mom.

Natasha…supermodel…

Noelle – New Jersey (NYU) – Dr. Grayson (ortho), Dr. Cutting (Surgeon)

Noelle at birth – she is truly lovely

Noelle with her NAM

And another with the NAM

Noelle – one week post op from her lip repair.

John F. – New York (NYU) – Dr. Grayson (ortho), Dr. Cutting (Surgeon)


John’s new born picture (this is a wide unilateral cleft – just an FYI since we have many bilateral babies on this site)

John with his NAM – one of the earlier models before they used wire (not plastic) for the nasal stents


Little John fresh from lip surgery

John today – 8 years old

Sachin – Canada – Dr. Tim Foley (ortho), Dr. Damir Matic (Surgeon)


Sachin’s newborn picture (he was born with a wide unilateral cleft )

Sachin with his NAM. His lip is taped so it’s a little hard to see.

Sachin’s beautiful new smile. Per Sachin’s dad, “The appliance in his nose is a post-op nasal stent to ensure the patency of the nostril (on the cleft side). it is used as a preventive measure to ensure the scar tissue doesn’t collapse the nostril. he wore it for 3-4 months, and then started taking it out, so now he doesn’t wear it. ”