Sunday, September 8, 2013

Clefts 101: Arming Ourselves with Information

As we all know, there is certainly no shortage of information accessible through the internet. We have a plethora of information available at our fingertips at any given time... so much that it can be hard to weed through it all to find the most valuable/useful/accurate information out there. Proceed at your own risk, right? I kept all of this in the back of my mind as I set out to scour the internet and educate myself with as much information about clefts as I could find. Causes, treatments and surgeries, timing, other associated issues linked with having a cleft, how to find a doctor, really anything and everything I could find. For those of you that know me, I'm a bit of a control freak and I'm a planner - I feel the need to know everything about, well, everything, so my near-obsessive search for information and subsequent analyzing and organizing of said information shouldn't come as much of a surprise to you.

Well friends, with all that data searching, information is what I got - lot's of it - and I thought I'd share some of my key learnings here for your benefit as well:
  1. One of the first things I learned, which surprised me, is that a cleft lip and/or a cleft palate is one of the most common birth defects in the US - about 1 in 700 babies are born with it. We always see those commercials for the children in other countries who have clefts, but we really don't ever hear about its true prevalence here in our own country. Interesting.
  2. The causes of clefts don't seem to be very well understood yet. There is a general agreement that it could be genetic/hereditary, but can also be caused by environmental factors such as lack of folic acid, smoking, drinking, and exposure to certain chemicals during the early stages of fetal development. For many of us, though, none of these circumstances apply, as is my case, so obviously there are still some causes unknown, or I guess it just can happen by chance.
  3. Cleft lip surgery generally takes place between 3-6 months of age, and cleft palate around 9-12 months, but the exact timing all depends on each individual child's circumstances.
  4. There are a number of approaches and/or devices that can be used in preparation for the various surgeries, and each doctor seems to have their own philosophy on what is best. The devices range from something that is surgically implanted into the baby's mouth, to another that fits like a retainer and is taped into place, while some teams just use taping on its own without the aid of a device, and others don't use anything. The purpose of any of these methods is to close the gap of the cleft as much as possible prior to surgery, which is believed by many doctors to allow for better results and reduces the need for additional touch-up surgeries.
    • Our surgeon uses the retainer-type device, which is called Nasoalveolar molding (NAM). It sort of looks like head-gear for a baby, and from what I have read from other parents who have had to use it on their babies, it is a bitch to use but totally worth it in the long run. Usually a baby will get fitted for it within their first few weeks of life, and will then wear it up until the gap is closed sufficiently enough for surgery. Be warned: I'm sure you will see many posts from me about the NAM once we get started with it.
  5. A cleft lip and/or palate can thankfully be cosmetically repaired, but there are other medical issues that stem from this and treatment can last well into the child's late teenage years. Most people's initial reaction upon hearing that a baby will have a cleft lip or palate is to reassure the parent by stating something along the lines of how medical technology is fantastic nowadays and you can barely even tell when a child has had a repair. This is often true, but it doesn't tell the whole story - children with a cleft often also face issues with: feeding from the time they are born (most cannot suck, so they will usually require special bottles for feeding); ear drainage issues which can impact hearing as well as impede speech development if not treated properly; dental issues as teeth may not come in where the cleft was located, or they may get teeth in unusual places (think roof of the mouth); not to mention the need for multiple surgeries as they get older and their faces grow since they may not always develop the same as children who do not have clefts (including nose, lip, jaw line, bone grafts for their teeth/gum line, etc). So while yes, it is certainly a treatable condition, and other children have it far worse, it is not as easy as just having a surgery or two and then getting on with life... this will likely be a way of life that the child and the family will need to deal with for many, many years.
  6. For the reasons above, it is usually recommended that children with a cleft are treated by a cleft or craniofacial team, which consists of 10 or more multi-disciplinary specialists who work together to come up with a coordinated treatment plan for the child, based on his/her specific needs. A team? I had no idea this was the approach, but I'm so glad it is because after better understanding all of the complex medical needs the baby will have, I couldn't imagine trying to find and work with all of these specialists one by one.
We are very fortunate to live in an area of the country that has multiple cleft teams within an hour to 2 hour drive from our home, which meant we had a choice of who we wanted to use for our baby's care. It was a tough choice, but we've decided to go with the cleft team out of Morristown's Goryeb Children's Hospital here in NJ. We met with them back in July (yes, ALL of them at the same time - it was quite intimidating) where we got to ask any questions we had about their approach and how they work together, and we walked away with a great feeling from the team. The plastic surgeon on the team who will do our baby's lip and palate surgeries really impressed us with how approachable he was and how patient he was in answering all of our questions. Not to mention he regularly volunteers and goes on mission trips with Operation Smile, where he will perform around 15 cleft repair surgeries A DAY while he's there!! I just find that to be a huge testament to his character and dedication to improving children's lives all around the world.

So there you have it - I just dumped a TON of information on you, but hopefully you will find it informative, especially for those families who have or are expecting a child with a cleft and are looking for clarity on all of the information out there. To that end, for those looking for further info I highly recommend checking out www.cleftline.org, which contains plenty of educational material as well as a listing of cleft teams across the country.

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