When I remember Carson’s birth, two words come to my mind–fear and uncertainty. I feel guilty saying it, but I couldn’t enjoy his birth. We were just too scared. He was born with a unilateral cleft lip (cleft on one side) and bilateral cleft palate (just about the entire roof of his mouth was open). The doctors told us the cleft could affect his brain, his heart, etc. He had to have a CAT scan and other tests to determine the extent of the cleft. Thankfully, after the test results were back, we found out that Carson had no other issues. There are a few ideas/items, in regard to the first few days/weeks after delivery, that I’d recommend to other parents who are having or have just given birth to a child like Carson: 1. Every case is different. Do what works for you and your family. I know that doesn’t sound helpful, but it’s true. There are so many suggestions, but if they aren’t working for you, forget it and try something else. 2. Don’t kill yourself trying to breastfeed. The entire roof of Carson’s mouth was open, so he could not suck. The lactation consultant at the hospital did not tell me this, and I never thought of it. I stressed myself out to the point of tears and exhaustion, trying to force Carson to breastfeed. I know that some babies with only a cleft lip are able to breast feed, but Carson was not. 3. Try the Haberman feeder. I know this doesn’t work for everyone, but I only know what worked for us. We tried this and it was great. Drawback–the nipples are $14 and rip easily. Our solution? Dr. Brown’s nipples. We cut tiny slits with a razor blade, to match the type of nipples in the Haberman nipples. We slid the handle end of a wooden spoon up into the nipple, so we could apply pressure lightly, without cutting too much. These nipples are $2.50 for 2. Carson used the Dr. Brown’s until after his 10 month surgery.
BEFORE CARSON’S FIRST SURGERY-
This is one of my favorite pictures of Carson, before he had his surgery. Notice he had a sun hat on, and you can barely see that he was hooked to me in the front pack baby carrier. I’m pointing this out for an important reason. The best advice I could give someone who is a parent to a child with a cleft, is to be proud of the child God gave you. We brought Carson everywhere: church, Walmart, the park, etc.
I’m not saying it will always be easy, because it wasn’t. But I believe it’s a must. When people want to see your baby, don’t hide, don’t make excuses, and don’t fall to pieces if someone does make a comment. We were blessed that no one made any negative comments about our son. I do stress the word negative. We had plenty of people make comments, pretty hilarious ones. But they spoke them out of a heart of caring and concern. We could have smarted off to them, gave a hurtful retort, or decided to take Carson back to the shadows of safety at home and never venture out again, but we chose to laugh. We chose joy. You must, in order to survive. Here’s a quick example (I’ve also included a link below, to another, longer story): I had Carson (before his cleft repair) in his car seat and clipped into the cart at Walmart. We had just walked into the store, when the greeter met us and said, “Oh, let me see that tiny baby!” The car seat was facing away from the elderly worker, so I whirled the cart around. The moment she saw him she gasped and loudly declared, “Oh, Honey! You do know that you can get those things fixed these days!” I nearly swallowed my tongue to keep from laughing. In hind sight, I wish I had dropped to my knees and said, “Oh, thank you! Thank you! I had know idea!” Now, I know others would have been upset, and maybe I should have been, but again, I chose joy. She was a sweet old lady, and she thought she was helping. And really? She did help. She’s still providing joy, even after 7 years. Click here if you want to read a longer, even funnier, story about another time we chose joy over despair.
FOUR MONTHS/ LIP SURGERY-
At 4 months, Carson had his first surgery to repair his lip. Some more (hopefully) helpful advice about the surgeries and after: 1. Network on Face Book with other cleft parents to find the best surgeon in your area. I praise the Lord that our pediatrician had studied under Dr. Kevin Hagan at Vanderbilt University Medical Center in Nashville, TN, and recommended him to us. We have met countless people who have had negative cleft repair stories. In our opinion, Dr. Hagan is the best, hands down. 2. You won’t quite recognize your child, when you first see him/her after surgery. This was the strangest experience. I knew my baby with the wide smile; this was not Carson; this was not the same baby. I felt like I was reaching for another mother’s baby the first time they handed him to me. But I remember the first time he smiled. I remember looking at Carson’s face light up in all the same smile places and saying, “There you are. There’s my buddy.” 3. Mamas, crawl right up there in the hospital bed with your baby. I didn’t the first surgery, because I didn’t think I was allowed. After Carson’s second surgery, at 10 months, I didn’t care. It was the best idea. I could never sleep in those chairs holding him, so this way we both got sleep and I was there to pat him, prop him, and love him. 4. Be your child’s advocate. If you know they’re in pain, get pain medication. The doctors/nurses don’t like to give it, and I understand, but if your child is in pain, request it. Demand it, if need be. I would request it about 20 min before I knew it was about to wear off. If I waited until it had completely worn off, he would be in pain before they got it ready and got back to us. 5. Put him/her in their car seat to sleep. When we got home, he needed to be elevated and this seemed to be the perfect slant for him. We would set it in his room, with the monitor on him. He wasn’t rolling over, yet, so I even put a sheet over it, to make it softer and laid him in it like it was a bed. It worked great for us! 6. Follow the rules for the dreaded No-Nos. No-Nos are arm braces Carson had to wear so that he couldn’t rub and pick at his sutures on his lip. These are bittersweet inventions. They are completely necessary, but dreadful. Carson’s nose was very itchy from the anesthesia and later from his lip healing. He tried so hard to get his hands to his nose and lip and would have done damage, had it not been for his No-Nos. I would let him rub his nose on my arm or shoulder for a few seconds, though. I could control it a little by pulling him back, if he was being too rough. I just couldn’t stand the idea of having an itch and not being able to scratch it!
DEALING WITH THE OPEN PALATE-
After Carson’s lip repair and recuperation period, he began eating more solid foods. This was a struggle, because of his open palate. A lot of his food would come out of his nose, until he figured out how to maneuver it to the back of his throat. I never realized where your tongue goes when you eat. Just try it. Swallow. Your tongue will press against the roof of your mouth. Carson had no roof. 1. Treat the Reflux- Carson cried most of the time and experienced a lot of reflux. His pediatrician told us it was just reflux, and he would be fine. In hind sight, I wish I had insisted that we tried a reflux medicine, like Zantac. I found out later, that many other children with cleft palates are given this, to help with their reflux. I truly believe Carson was in discomfort most of the time, due to the severe reflux. When he spit up, it didn’t just go out his mouth, but all the way out of his nose. It sounds gross, but I’ve burped and had that burning feeling up in my throat. Think of how it would burn, without that barrier of a palate. Uggh. After his surgery, at 10 months, his reflux stopped and so did the fussiness. He became a happy baby. I still feel guilty about this. Babies don’t change their personalities over night. I thought he was just a strong-willed, fussy little booger. I truly believe that we/he could have enjoyed the first few months of his life so much more, if we had treated the reflux. 2. Slightly recline them when feeding them with a spoon. Whether you have a reclining high chair or need to throw a towel over the bouncy seat (like we did), I recommend reclining your child when he/she is eating. This seemed to help Carson with not spitting the food out his nose. We only did this for a little while, until he seemed to get the hang of pushing his food down, instead of up.
TEN MONTHS/ PALATE SURGERY-
A few more tips: 1. Expect a tougher recovery. Of course, I’m only speaking from our experience. Because of swelling in the nasal cavity and in his mouth, it was difficult for him to breathe and swallow right after surgery. The extreme difficulty only lasted about a day. In recovery, he was a little disoriented, scared and in pain. Crying made it worse. We asked for pain meds, and this helped to calm him and helped him sleep. Again, you have to ask. After the first day, the struggles were propping him up and helping him sleep. This is what I liked about sleeping in the bed with him. I could prop him up on me and we could both still get some sleep. 2. They heal very quickly. Let them. They do heal in just a couple of days. It just hurt me to think of him eating (soft foods), but when the Doctor allowed it, he was more than ready. 3. The roof of the mouth will be tender for years. This may seem crazy, but it is true. Anyone who has had major surgery (I’m thinking of my c-section) will know that their scar stays tender for a long time. My boys are 6 years apart, but my scar remained a little tender even up until I was pregnant with my second child. Carson was very sensitive (and still is a little) to hot foods/drinks. Things that I would consider warm, would make him cringe and spit his food out in pain. I know I said they heal quickly, and they do, but not in the area of temperature. Nothing else seemed to bother him, but this.
WE’VE BEEN BLESSED-
We have been blessed that Carson only had to have two surgeries–one to close his lip and one to close his palate. As I mentioned earlier, I believe this is due to the skillful hands of Dr. Hagan and the leading of the Lord. Carson has also not had chronic ear infections or any other problems, as a result of his cleft. I understand this is not normally the case, so we are thankful. He’s been healthier than a lot of other typical kids his age. Carson at 5 years old, on his first day of Kindergarten!!
THE (NEAR) FUTURE-
Carson is now seven and has seen his dentist, Ortho surgeon and orthodontist many times. The whole teeth situation for cleft children is quite something. It was very interesting the first time our dentist did X-rays on Carson. He started analyzing them, telling me that these two teeth were missing, and this tooth was sideways, and this one is in the roof of his mouth, and this one up above his other teeth would not have a permanent tooth, etc. I was staring at him as he listed the issues, thinking what a long road we had ahead of us. After listing a gazillion problems, he finished with, “…but I’ve seen a lot worse.” I laughed out loud. A lot worse? That didn’t seem possible. Carson is scheduled to have a spacer inserted into his upper mouth in November. His palate is too small to do his next (and hopefully, final) surgery. This will expand his palate, so that they can do the bone graft surgery. This is where they shave a small piece of bone from his hip and fuse the cleft together, that is still present above his gum line. Although his palate was repaired, there still remains an area in the upper gums that has a cleft. They want to fuse this together, before he begins to get his permanent teeth. This will keep his teeth from shifting. Well, seeing that he has permanent teeth…haha. I know it’s not funny, but remember, we are choosing joy, right?
THE (FUTURE) FUTURE-
So, our journey continues and will for many more years. But our Carson is a strong little guy. He will be okay, and we will be okay. I read something a mom wrote on a Cleft Lip Face Book page. She said her son was, “cleft-strong.” I thought that was a perfect line. We all have something we are dealing with in our lives, but we also all have a choice how we deal with our situations. Yes, it’s okay to curl up in a fetal position and cry your eyes out, but not forever. Your little wide-smiled buddy is waiting for your acceptance, your strength, your love, and your joy. Give it all. Be cleft-strong!