My son, Max, was born in the middle of a November blizzard in 2008 with a bilateral cleft lip and palate. Rewind to our 20 week ultrasound, where we were excited to find out his gender but were surprised to instead learn that he had a cleft. The tech was certain about his lip but because of the size, we were told to plan as if his palate was involved also. Unsure what to do next, I contacted my OB-GYN to fill him in and he told us to get in contact with Dr. James Lehman at Akron Children’s Pediatric Plastic and Reconstructive Surgery Center. My husband and I had no knowledge of clefts nor did we have any family history. This was all new to us.
Thankfully, we were able to meet with Dr. Lehman right away and he walked us through what could happen after Max arrived. He was able to give us a timeline of how things typically go but also let us know that each cleft kiddo is different and doesn’t always fit the mold but he’d do his best to prepare us — and he did! We felt very at ease after meeting with him and he even gave us one of the special feeder bottles we’d be using with Max to practice with before we had a hungry newborn in our arms!
Just after 3 a.m. on a snowy November morning, we welcomed Max into our family. He arrived quickly and was as healthy as can be! He was checked out thoroughly and it was confirmed that his palate was involved as well. He had no trouble feeding from the special feeder bottle and we went home together the next day.
At 1 week old, Max went to his first craniofacial clinic visit, and we met a whole team of doctors that would be following him through his cleft journey. While it was a tad overwhelming, it was very informative and everyone put our minds at ease. We knew he was in good hands! A couple days later he had his very first dentist appointment! Boy, did I get a lot of questions and stares in that waiting room! Not often do you see a newborn at the dentist. He was examined by the dentist and a mold was made for an obturator. The obturator looked like a retainer and would act like a palate for him so he was able to eat without the milk coming out his nose. Once the mold was made, the dentist showed us how to stick it in there with denture cream. I thought … is he serious?! But it worked! I never thought I’d be in line at the drugstore buying diapers and denture cream but you do what ya gotta do to get your baby fed!
At 1 month, Max was eating well and Dr. Lehman was happy with his progress. At this time he began prepping Max’s lip for repair. To do this he needed to push the front of his lip downward to line it up better with the rest of his lip. Although there were different methods and thoughts on this topic, he wanted to tape Max’s lip. With all we had already been through, for some reason this was a hard one! I didn’t want a piece of tape across his face for months. I didn’t want his face covered or people asking questions. I didn’t want to deal with changing the tape or the hassle if he pulled it off and I certainly didn’t want any pictures of his little face with this tape on it.
We were nearing Christmas at this point and we had plans to get a Christmas picture of him and his brother. I had plans to take the tape off for picture day but my plans quickly changed when I realized that the tape left a residue on his cheeks made his cheeks very chapped. So the tape stayed on. Looking back on it now, I’m so, so glad we left the tape on! It was a huge part of his journey and our daily lives for so long.
At about 3 months old, Max had his first surgery. Dr. Lehman repaired his lip and his ENT put in ear tubes as he had already had 2 ear infections at that point, which is common with cleft kids. There is truly nothing like handing your baby to a nurse and watching them walk away. After a few hours, Dr. Lehman walked out to the waiting area and high-fived my husband and I saying “All done. Everything went great!” What a relief! We stayed 2 nights in the hospital due to Max having an allergic reaction to the pain meds, but once we got that figured out we were all set to head home! The days after were tough. Max was uncomfortable and he wasn’t used to eating with his lip intact … or it being so swollen. He still had his obturator in at this point and even had to learn to breathe with his new lip. He was constantly sucking his bottom lip inward so far that he couldn’t breathe. Boy, did that keep us up at night! But he finally got the hang of it.
Just before his 1st birthday, Max had his palate repaired by Dr. Lehman, who used tissue to close the palate and make it intact. He was on a soft food diet for a short time afterwards so he celebrated his birthday with a bowl of ice cream at his party. Shortly after that surgery he developed a small fistula, a hole in his palate that had opened back up. Dr. Lehman took him back to the OR and closed it. This surgery was fairly easy compared to what we had already endured, and after just a few hours he was back to himself. We even have photos of him running down the hall in his hospital gown!
At 3 years old, we talked to Dr. Lehman about our concerns that Max’s nose was very flat, which was causing a lot of snoring and a lot of waking at night. To correct that, Dr. Lehman did a rhinoplasty to lift the tip of Max’s nose to make it easier for him to breathe. He also removed a ton of scar tissue, from past surgeries, that was essentially “clogging up” his nose.
This was a very hard surgery. Max had no memory of his past surgeries but now was very aware of what was going on. To prepare, we took an operating room tour at the hospital. Surgery day came and he did great! The recovery was difficult as he was a busy boy and he really needed to rest. We did our best but he was bound and determined to play. His nose recovered well, and he no longer snored and for the first time in a long time was able to sleep through the night.
After that, we had a nice long break from surgery! Max played baseball, did speech therapy with Miss Patti at Dr. Ananth Murthy’s office, learned to ride his bike, attended preschool, started kindergarten, started taking drum lessons at age 6 and got his first set of braces!
Then this past February, at age 9, Max had his biggest surgery to date — his bone graft. He didn’t remember his past surgeries so it felt like we were starting all over, and it was tough. He was quite nervous, understandably. Dr. Lehman had since retired and Max was now seeing Dr. Murthy.
During this surgery, Dr. Murthy was going to be taking bone from Max’s hip and placing it in the gap he still had in his gum line from his cleft at birth. His orthodontist had moved all of his baby teeth with braces and those adult teeth were ready to come down but there was no bone for them to move through, which made this surgery a must!
Surgery went well and Max came home that same day. Now came the tricky part: no chewing allowed while that bone healed. By the time Max had his official post-op appointment, he had gone 47 days without chewing. He was a trouper and never complained once! During recovery he was making a list of all the things he had planned to eat once he got the go-ahead from Dr. Murthy. His first meal was a huge donut from the hospital cafeteria!
Right now we don’t know if or when Max will need another surgery. We are kind of at a wait-and-see point. So for now he’ll continue being a funny 9 year old boy who loves sarcasm, baseball, running cross county, math and monster trucks.