Cleft Clinic

Brandon just got released a few days ago from the hospital after recovering from a nasty virus. Given his medical history, acute illnesses sometimes affect him worse than it would other kids. He is now doing much better and ready to move forward.

Today we had a follow up appointment at the Cleft Clinic. Cleft Clinic is where a team of professionals come together to evaluate various kids in different stages of their cleft repairs. The cleft team consists of a speech therapist, plastic surgeon, oral surgeon, genetic counselor, ENT physician (Ear, Nose and Throat), and a BCMH nurse (Bureau for Children with Medical Handicaps).

The speech therapist talks to you about feeding issues, speech development, etc... So far Brandon is doing well. Even though his speech is not clear, he is trying to communicate appropriately. The speech therapist tells me this is excellent. His receptive language is right on target; and as he turns three or four years of age, we will work more on his expressive language by getting him into speech therapy.

The plastic surgeon evaluates the various types of clefts and talks to you about when he feels your child will be ready for the different stages of surgery that they must endure to repair their cleft lip/palate. Today we were told that Brandon is doing fantastic and at this point he can be reassessed in one year.

The oral surgeon is there to discuss dental development and they are also involved with performing surgery around the age of 7-10. At this point Brandon's jaw/palate is in three pieces instead of one solid piece. Around the age of 7-10 they will do a bone graph where they take some of the "spongy" bone out of his hip and implant it in the crevices of his palate that still need fused together. Today the oral surgeon told me that the recovery for this is usually 2-3 months for his mouth. During that time he will have to have a soft diet - no biting allowed. It will also take approximately 6 weeks for his hip to heal, and he will have to refrain from any sports, stairs, or strenuous activity during that time until his hip is fully healed.

A genetic counselor is available to follow up with any questions from a genetic standpoint. Some children with clefts have an associated syndrome. A genetic counselor can link you with a Genetisist for further testing and evaluation if indicated.

The ENT doctor is on board as well. Many kids with cleft palates are more prone to getting frequent ear infections. They generally coordinate putting tubes in their ears when a child is having another surgery to help reduce ear infections until the palate is fully closed. Brandon already had his ear tubes put in as mentioned before when he was 9 months old.

Last but not least is the BCMH nurse. She is there to help enroll your child for assistance through the Bureau for Children with Medical Handicaps. Kids with clefts (and other diagnoses)qualify for this assistance for diagnostic purposes, which usually helps with medical bills for a few months while getting diagnostic testing done. After that it is the parents responsibility to apply for financial coverage through BCMH to include treatment. So far I haven't had much luck with getting coverage for his treatment. Brandon has gotten BCMH assistance a few times for diagnostic services, but it never carries over for treatment. Apparently, due to our income we haven't qualified for extra coverage, but I am in the process of reapplying due to added medical costs which include Brandon's growth hormone injections. I have been struggling with our governments healthcare system for some time. My child can have the same diagnosis as another child. That child's parent(s) may not work and therefore they would qualify for assistance. Then there are families like mine where both parents work and you rack up tons of medical bills, but are told you don't qualify for extra help because you make too much. These medications, surgeries, and treatments still do not come cheap and even working parents can struggle sometimes.

Overall, we had a good visit today. No more surgeries on the horizon for some time. Next stop is Brandon's 18 month well check in two weeks and then off to U of M to see the opthamologist again.

Life after surgery

Easter 2009. No more surgeries for a couple years...at least we think so.

Lovin' life, even when my mom makes me wear silly things.

I am now walking.

Getting ready to go on my first airplane ride. Since I had such a rough year, I get to go to Disney World.

What else can I play with in the hotel room?

My only picture with Disney characters before the rain came.

Little sport.

16 months old. This is me...as laid back as they come.

3rd Surgery: Palate repair

March 30th, 2009. Getting ready for surgery...again.

I was pretty entertaining.

The hospital let me play in their wagon to pass time.

Getting tired of waiting.

Mommy holding me after surgery. I was bleeding a lot. I didn't like when the nurses had to suction me.

Tube feeding post op. No bottles allowed again, only tube feeding for 10 days. The doctor said if it can't fit through the tube then I can't have it. I drank a lot of Pediasure. This was one way for mommy to break me from the bottle. After 10 days of this, mommy made me use sippy cups. (Nuby and Munchkin brand sippy cups with the clear silicone tops were the easiest for me to

use. I'm still not good at sucking)

Very disappointed that I had to have the arm splints on again for 10 days.

The doctor also required me to sleep on an incline or elevated in my car seat.

Waiting to get discharged from the hospital. We spent a day and a half here this time.

No matter how many surgeries I watch him go through, it never gets easier. I get better and better at packing for the hospital, finding ways to distract myself as I wait for the surgeon to come out and say "Everything went very well", and get used to sleeping in uncomfortable positions on the hard pull out sofas or upright in a rocking chair; but I hate watching my little guy go through this. As he gets older and more aware, it gets harder and harder.

Misc. Pictures

Christmas 2008. A couple weeks after surgery. So glad to have the catheter out.

Had to go to U of M to get my eyes looked at. May have to have surgery on my eye muscles if they don't get stronger on their own.

Getting more mobile...

Valentines day 2009

The scars are fading

Spoon feeding for the first time.

My first Halloween.

Healing more and more everyday.

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Getting ready for Christmas.
L

A special thanks to Dr. Hunyadi for his wonderful surgical skills. Brandon's lip looks excellent!

Post Op

One day post op. Sis is so happy to see me.

Brandon's surgeon was amazing. I have never seen such tiny stitches. I cried so hard when I first saw him in the recovery room. His face was so swollen and I was scared he was going to be in a great deal of pain. He was given morphine for the pain, which helped, but morphine has a side effect of decreasing your respirations. His oxygen saturation level dropped so low we ended up having to take turns holding oxygen over his face all night.

Wearing his arm splints. This was a requirement as well for 10 days to prevent him from pulling at the surgical sight. We nicknamed him "Houdini" because he kept finding ways to get his arms out.

One month after surgery. Doing great. It's amazing how fast they heal.

1st Surgery: Lip Repair 7/11/2008

Each surgeon has their own requirements before they will perform surgery. In Brandon's case, he had to be at least 3 months old, 10 pounds, and have a good hemoglobin.
Brandon is four months old here...we had to wait until he gained enough weight.


Morning of Brandon's first surgery. He was doing very well playing before we left the house at 5:30AM, considering he was not allowed to have anything to eat or drink after midnight.

Just waiting for the doctors to get this show on the road.

Tube feeding after surgery. No bottles were allowed. We had to put his formula in a syringe and tube feed him for 10 days until he was healed.

Only spent one night in the hospital and then he was released to go home the following morning since he was feeding so well with the tube.

Some pre surgery pictures

So happy...and look at all that hair!

Welcoming Brandon Thomas Burditt

March 4th, 2008.

Weight: 6lb, 4oz Length: 18 3/4".

So precious...Still feeling a little nervous, but feeling extremely blessed that he was healthy. We found out he not only had a cleft lip and palate, but was also born with a hypospadius (a birth defect of the urethra in males)as well. Urology to get involved down the road to discuss surgery.

Overall, doing well. Teaching him to use his special needs feeder to eat which was time consuming, but at least he was eating, so they let us go home after a couple days.

Before leaving the hospital a staff member shared a touching personal story with me. I know now that it was not something I did wrong, or something that happened to me. Brandon was the one who was going to have to go through the pain of surgeries, etc... He knows no different. He is innocent, and is a child that needs loved like any other. I believe now that God chose me to be his mom, because he knew that I could give him all of the love and care he needed...I love him unconditionally.

Finding out: A Mother's Perspective

I remember going in for my 20 week ultrasound. I was so excited to find out if I was having a boy or a girl. My midwives told me that so far all of my labs and vital signs were picture perfect for a pregnancy. Then it happened...I saw the ultrasound tech's face turn serious. She kept taking more and more pictures of my son's face, but wasn't saying anything. With my medical background I knew the possibilities; I finally came out and asked..."What's wrong?","Is there a cleft?". The ultrasound techs aren't allowed to really say anything until it is confirmed by a doctor, but she did say she wasn't sure. Tears began to roll down my face, but I was trying to stay strong. My daughter was with me and I didn't want her to be scared. More and more pictures were taken. I was then asked to wait 4 weeks before I came back to get another ultrasound. This would allow my baby more time to grow and then confirm what they thought...my baby was going to have a cleft lip and palate. I was devastated, but there was nothing I could do. I searched online for any information and pictures I could find to satisfy my desire to learn more. I had no family history of this birth defect. I was referred to a high risk doctor for further evaluation...from there my world began to fall apart. The more and more they checked my baby inside my womb, other concerns began to develop. As it turned out, my little boy was not measuring "normally" and the doctor was worried about a form of skeletal dysplasia, specifically - achondroplasia. For those of you who don't know, this is the most common type of dwarfism. They sent me to a neonatologist to learn more about different types of skeletal dysplasia. Some skelatal dysplasias are lethal, but most have a good prognosis. This was the point when I opted for an amniocentesis to rule out a diagnosis of achondroplasia or chromosomal defect. I felt I needed to do this to prepare myself for what was to come. I had hit my ultimate low...what was wrong with my baby growing inside of me...would I finally have him and lose him all too soon...what did I do wrong...why is this happening to me? Many more weeks of anxiety and anticipation...and then the amnio results came in. Everything was normal!...(Sigh of relief). Still feeling nervous, not sure how my baby will look or what the severity of the cleft will be, but am definitely more hopeful at this point.