How's Hudsyn??

May 4-7, 2019 is Cleft Lip and Palate Awareness Week. There are so many misconceptions about individuals born with cleft lip and/or palate and this week is to help those who do not have knowledge of this particular medical issue to understand a little better what all is affected by cleft lip and palate. When we began this journey in September of 2016 I didn’t know a single thing about cleft lip and/or palate. I had maybe seen one or two people who were affected by it, but honestly didn’t even know exactly what it was.

One of the most common misconceptions is that this is simply a cosmetic issue. This could not be farther from the truth. So many things are affected by cleft lip and palate including but not limited to feeding, hearing, speech, orthodontics, and jaw growth. Yes, physical appearance is definitely affected, but there is so much more to it than that. Often, individuals born with a cleft lip and/or palate require numerous surgeries well into early adulthood. Hudsyn has done well with each of the 4 surgeries she has had, but continue to have some trouble with her ears. She gets ear infections easily and they are difficult to get rid of. She has done extremely well with eating and doesn’t seem to have trouble with anything except chocolate anymore. Every single time she eats chocolate, some of it comes out of her nose. I don’t know if it is becuase of the weight or consistency of chocolate or what, but it never fails! And this girl LOVES chocolate, so it happens quite frequently!
Clefts are one of the most common birth defects in the United States. According to the CDC, about 7,000 babies are born with a cleft lip and/or palate in the United States. Most cases are believed to be caused by an interaction of genetic and environmental factors and for most babies, a cause is never truly known.
Another misconception commonly associated with cleft lip and palate is that affected inviduals have learning difficulties. There are a number of syndromes that can be associated with cleft lip and palate, but the presence of cleft lip and palate does not ensure the presence one or more of these syndromes.
People also often assume that only children in the developing world are born with cleft lip(s) and/or palate(s). This is clearly not the case. Children born throughout the world are affected by either a cleft lip, palate, or both. However, great strides have been made in the repair techniques used in the United States, leaving affected individuals with nearly unnoticeable scars. Many doctors from the United States volunteer their time to perform surgical repairs in developing countries; however, the equipment and resources are typically nowhere near the same as they are here. Often, the results of surgeries performed in other countries are not as flawless as those performed in the United States simply due to the facilities and resources.
Interestingly, African-American babies are less likely to be born with a cleft lip and/or palate than other ethnic groups. Because ethnicity plays a role in the risk of being born with cleft lip and or palate, African-American babies have a 1 in 2,000 chance of being affected by either a cleft lip, cleft palate, or both, while Asian-Americans have a likelihood of 1 in 500. The likelihood for Caucasian babies to be born with one, the other, or both is 1 in 700. Also, boys of all races are about twice as likely to be affected as girls.
Cleft lip and cleft palate occur together in one half of all cases. Cleft lip is a separation between two sides of the upper lip that creates a narrowing or gap. Cleft palate is similar, but occurs in the roof of the mouth (also known as the palate). Some babies are born with only one or the other, but in half of all cases, they occur together.
Despite the complications often associated with cleft lip and/or palate, most children grow up to lead perfectly normal lives. Sometimes when I look back over our journey I am overwhelmed with what is to come and what all she has had to endure. However, I am confident that she was hand picked by God and he has a wonderful plan for her life. I cannot wait to see what it is!

When Hudsyn was born and I was forced to learn about clefts - something I knew nothing about - I was amazed at how little is known nationwide. I attribute a large part of this to the fact that in the United States we "fix it" and then move on and don’t talk about it. In many other countries, where cleft repair is not as easily accessible, it is a much more common subject. Kids are often unable to have reparative surgery until they are 8 or 9 years old, making such conversation difficult to avoid. Hudsyn will probably always look a little "different" but by the time she goes to school her scars will likely have had time to heal very well. In foreign countries, however, cleft affected children aren’t quite so lucky.

July is National cleft and craniofacial awareness month so I figured there was no better time to share some interesting but little known information in hopes of educating those who don’t know - even if just a little.

We all start out with a cleft. Every single one of us. A cleft is defined in lame man’s terms as "a hole or indention in any part of the body." The skull is formed between 5 and 8 weeks gestation. Both sides of the skull form independent of the other beginning at the back. Formation continues around the sides and the two meet. A cleft lip and/or palate is formed when this area does not fuse together properly.

Interestingly, a cleft can occur in the brain, eye, on the fingers and toes, on the buttocks - which is called a sacral dimple, chin, face - known as a Tessier’s cleft, or basically anywhere else on the body. If you have dimples, those are a form of cleft too!

Clefts come in all different combinations so every child born with a cleft is unique. Some clefts require no repair while others require extensive surgeries, sometimes throughout the individual’s life. Clefts, whether lip only or lip and palate, can affect a number of aspects of an individual’s life, including feeding, ear health and hearing, teeth, and speech. Sometimes certain syndromes also accompany clefts. Even if a cleft is fully repaired, there’s often many more years of doctors visits, therapies, and/or procedures to treat these additional issues.

Animals can also be born with clefts. I have seen some pictures during my research since Hudsyn’s birth of dogs and cats who had them. A few weeks ago, however, when we were at a festival in Red River, we met some people who had a dog with a cleft lip. It is so crazy to me the things that go on in the world we live in that we know nothing about! I know Hudsyn didn’t understand what was going on at the time, but it was interesting to me to see that sweet puppy!

I want nothing more than for Hudsyn to grow up to be proud of what she has been through. I truly believe it takes a special person to persevere through the surgeries and issues that having a cleft lip and palate bring. My sweet girl is absolutely one of those people! She is strong, stubborn, and determined and takes it all like a champ. As she grows, I hope and pray that she remembers how strong and beautiful she is. She is one of a kind and God knew this little lady would persevere through whatever came her way when he created her just the way he did.

I am often probably too forthcoming with complete strangers about Hudsyn’s cleft. I tend to mention that she was born with a cleft lip and palate before they even have a chance to wonder. I do so both in hopes of spreading awareness, and avoiding the awkward stares. Clefts would be much less taboo if people knew more about them. So, I encourage you to learn more about clefts and craniofacial abnormalities this month. Read about it - or better yet, ask questions! I would much rather someone ask questions and learn about the condition than stare at my sweet girl and make her uncomfortable. As she grows she will only become more aware and concerned about how others see her and I hope to shield her from as much hurt as I can. But, I also hope to show her the importance of such awareness and encourage her to take part in educating others.

So, Happy National Cleft and Craniofacial Awareness month to you, and please don’t hesitate to ask questions if you have them!

We saw Dr. Smith, Hudsyn’s surgeon this morning. He said she looks good but definitely has a fistula near the front of her Palate. A fistula is defined as “an abnormal or surgically made passage between a hollow or tubular organ and the the body surface or between two hollow or tubular organs.” We knew she had a “hole” in the front of her mouth right behind her gum line and that they would fix it when they did the bone graft in the future (somewhere between 7 and 9 years old); but, we didn’t know that part of that hole was this fistula that formed after her Palate surgery in September. The hole is about as big around as the tip of my pinky finger. But, as long as it doesn’t begin to cause her any problems eating or anything we will stick to the plan and fix it when she is a little older. If it does happen to begin to cause any issues they will repair it sooner.

We will also watch her speech and likely start her in some sort of speech program as soon as she starts saying a few more words. There is also an additional surgery she could possibly need in the next couple of years to aid in her speech development. But, we are kind of in a “hurry up and wait” phase right now. We will wait to see how her speech progresses and how (or if) the fistula affects her eating and drinking.

Everyone in the doctor’s office thought she was adorable of course, and she cried a little when he looked in her mouth but quit as soon as he was done which was a big plus! She even showed off for him a little :)

As we were leaving the office, Dr. Smith introduced us to a young man (probably 16-18 years old) who was just “finishing up” on his cleft/surgery journey with Dr. Smith. He told the boy and his mother “this little girl is just beginning her cleft journey and you’ve just finished yours!” The boy smiled from ear to ear. We shared the elevator with them on the way down and Hudsyn flirted with him the entire time. It is always comforting to see other kids in his office and know that there are so many people who have been where we are.

Although I still struggle with “why” my Sweet Huddy girl was chosen for this particular journey, I am reminded frequently how blessed we have been by the people we have met along the way. Experienced “cleft-moms” have blessed and helped me in so many ways and I hope I am able to do the same for others in the future.