Sunday, October 26, 2008

Dr. Susan Downey, plastic surgeon: cleft palate surgery in third world countries

Notes from NSSLHA meeting, 10/6/08

Reconstructive surgery means to restore to the normal form or function (vs. cosmetic surgery). If the lip and/or palate doesn’t fuse, then form and function need to be restored.

Dr. Downey has been on 13 missions to different countries, but most recently she’s been focusing on Ecuador. Organizations she’s been with include Healing the Children, Interplast, and Operation Smile. The ultimate goal is to train people in other nations, and to go as teachers and educators. The type of palate repair surgery developed at CHLA is innovative and is not taught in other parts of the world. The advantage to this is that the muscles are repositioned and the palate is lengthened, which might result in little to no need for speech therapy following surgery.

Cleft lip/plate are among the most common birth defects worldwide, and are increased in areas with poor nutrition- especially folic acid. They affect an estimated 1 in 600 newborns. In some cases, there may be genetic components from smaller mating pools.

The goal is to operate on children or adults at any age. As long as children can eat appropriately, the need is not as urgent as with other surgeries. Palate repair in the US is ideally done at 1 year of age.

The team: nurses, anesthesia, plastic surgeons, medical records/coordinator, dentists, speech therapists, youth from a high school volunteer program, and med students.

Once in-country, Operation Smile does a screening of children. People find out about it through radios, churches, and non-profit organizations in the area. Because there is no back-up if things go wrong, they have to be careful not to operate on people with complicating medical conditions. Then they organize the charts to think about how they’re going to do the schedule of surgery. Because adults wake up slower from anesthesia, they have surgeries first in the day.

The airway is suddenly changed after surgery, so a “tongue stitch” can help bring the tongue forward and children are also placed on their side to help them breathe after surgery.

Operation on a cleft lip may take 45 minutes, whereas palate repair will take about 2 hours.

Some people walk for days and take the bus for hours afterward, in order to come for surgery. Often the father, then, is the one to accompany the child.

In surgery, they work closely with local doctors and anesthesiologists so that they can take over after the team leaves. Unfortunately, they don’t often get long-term follow-up, which is a problem for SLP’s—whose role is most effective when they do education with local professionals.

Operation Smile has training programs in the US also, to bring professionals for training. Occasionally children are also brought to the US for surgery. They often partner a lot with local organizations (e.g., Rotary Clubs, Mormon missionaries) overseas, and people in the community help with translation.

To find out about volunteer opportunities on these trips, consult the Operation Smile website or ask to accompany a speech therapist who has contacts in the community. The best way to get in is to be totally flexible in terms of time and say “call me if you have an opening”. If you speak another language, this increases the likelihood that they will need you. Some countries have stipulations on whether (or how) students can have a role on a team. Most trips last 1-2 weeks, with the first week for screening and the second week for operations.

1 comment:

  1. Anonymous10:08 AM


    My name is Kristy Heltne, I am 19 years old and a cleft lip palate. Im in need of surgeries but do not know where to go to finish them. My teeth are still messed up, and sometimes fluids run through my nose still, I have hearing aids and I dont feel comfortable enough to go to a dentist, rather go to a specialist. I have trouble breathing at night, and wake up multiple times and have hard time swallowing, and my nose is always stuffed up.

    I'm very positive in life though, I smile on the go, and dont let the mean things get to me. I love sports, drawing, reading, dancing, jogging, everything. I enjoy life and take it as it is but lets face it, its hard being a cleft lip palate, I'm not saying Im the only one or there isn't others who dealing with worse. I'm just saying I wish I could wake up one day with a straight nose and a full mouth of straight teeth to smile with.. its a shame, hard to get jobs period no matter what the discrimination rights says. I really do question myself, I stay up beat and strong and keep my heart warm but sometimes during those down days, I look in the mirror and see what the world is seeing and its a bummer. I really dont know why I even have a boyfriend, I dont ask him why he likes me or anything but its something in mind. Please, help me in anyway you can, Im desperate, I went to Shriners and Deornbechers for awhile and had some surgeries but I know I'm not finished.Im an official adult cleft lip palate and its getting tougher as the age gets higher. I want so much more it hurts, because I know with the cost it'll never get done. I just want to smile and be free, I am but not in a physical way you know. I still have extra skin on the right side of my lip, they took most of it off, but theres still some left. Im young and would like to enjoy it like any 19 year old should. I do hold back reluctantly. I am willing to travel anywhere to get this done, I DO NOT CARE.. Im super adventurous I really need this.

    I need help, I dont have a lot of money but Im sure there has to be something?
    anything please!

    Kristy Heltne
    430 ne 160th ave
    Portland, OR 97230

    phone: 503-774-1655 or 503-875-6287