"Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy."
Quote by: Ven. Thich Nhat Hanh

Friday, March 26, 2004

Why the NAM?

Why the NAM?

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.

Friday, March 12, 2004

8 Months Pregnant - Sonogram of Emily

8 Months Pregnant - Sonogram of Emily

Friday, March 12th, 2004

I've decided to create a blog to chronicle my family's story. I am eight months pregnant and due April 13th. I found out during a routine ultrasound at 20 weeks that my baby, Emily Rose, will be born with cleft lip and palate. I am creating this blog to help me work through the issues of dealing with a child that has special needs, but also to help others who may be facing the same issues as me. I have found that reaching out to people who have been through, or are going through, taking care of a child with cleft lip and/or palate has been part of my healing process in learning to accept that my baby will not be born "perfect."

The first place I recommend you visit if you want to learn more about what cleft lip and palate are and also meet some great people is CleftAdvocate.org.

Emily's First Photob>

Send me an email if you have questions or just need some support.