NOTE: The mother of a current patient shared her family’s story for the Clinic’s Annual Appeal. We could only use a small portion in the brochure, so here is the complete version. Thanks, Patricia and August, for allowing us to be part of your journey!
August’s journey has had a few speed bumps along the way, but through it all August remains a happy and healthy boy.
I knew going in that August was going to be born with a bi-lateral cleft lip and palate, but I wasn’t sure how I would react seeing him for the first time. Of all the birth defects out there, this one scared me the most. It’s your child’s face! How do you prepare yourself for this? How do you prepare your family and friends? How will other people react? These were the questions I asked.
To prep for August’s birth, we were put into contact with the Lancaster Cleft Palate Clinic. They helped ease some of our worries. I also limited my research to just a few pictures, because every child is different, and I didn’t want to overwhelm myself. I located a few pictures that were age appropriate for my children, who were 11 and 6 at the time. I wanted them to understand and ask any questions they might have before and after August was born.
August’s journey began in August, 2017, via C-section. He came into this world at a whopping 9 lbs, 15 oz. I didn’t really get to see August in the operation room because he was taken immediately to the NICU—not because of his cleft lip and palate like many may think, but for a different reason. He had low sugars. He spent close to his first 48hrs in the NICU before joining me on the maternity floor. My husband, children, and his cousins visited him in the NICU.
Once we were home, we ran into a few obstacles. One of the biggest was his failure to thrive. August was having trouble figuring out how to drink. We struggled for several weeks to get on track, and he lost several pounds. This meant many sleepless nights for me, as I had to feed him every 2 to 3 hours and record every ounce he drank.
As the weeks went by, the numbers on the scale finally began to climb. August was finally cleared, and “failure to thrive” was removed from his charts. During this time, we also had visits with a pediatric cardiologist for August’s aortic arch anomaly and patent foramen ovale. After a few tests his heart was cleared, though it will always be monitored and noted in his charts. August failed his newborn hearing test, which for bi-lateral infants isn’t uncommon due to fluid buildup in the inner ear.
We began taping his lip when he was about 12 days old. This process was to help bring his edges together to make surgery a little easier. I created a little taping kit. It contained a small pair of scissors, dermaskin cut into quarter-sized circles, and the specialized tape. We kept the kit in his diaper bag. If the tape ripped, it could be replaced. I was diligent in making sure that August wore his tape daily, only allowing for a break here and there. The taping was working! It was pulling everything together.
Unfortunately, after a month and a half, we had to stop. August had a reaction to the adhesive. It would clear up and come back. Then we had a major setback. The skin tore just below his nose, in the area where his nose and upper lip met. Just like that, the taping stopped to prevent further damage. This was frustrating. We worried that stopping the taping would not help the surgeon enough to place his lip back together.
Surgery number one was set for November 15, 2017, at Penn State Hershey Medical Center. August was just a little over three months old. During this surgery, Dr. Samson was going to perform a lip repair and rhinoplasty, and an ENT (ear, nose, and throat specialist) was going to place in ear tubes. This surgery was supposed to be an in-and-out procedure. Simple enough.
The surgery took longer than expected. August’s lip muscles were tighter than anticipated because of stopping the taping. He was in surgery for about six hours. While he was in recovery, he began having difficulty breathing. They took him to be re-intubated. For whatever reason, August pulled his tube and went into respiratory arrest. The tube was replaced, and he went into recovery again. They kept him sedated and intubated for about three days.
Slowly, August began to recover. Five days after the surgery, we were finally released. His recovery at home began. August was swollen for several weeks. I applied a Vaseline or Aquaphor baby cream to his scab daily to keep it moist and help keep scarring to a minimum.
During our post-op appointments, everything looked good and we were right on track. August again failed his hearing tests. The fluids were still blocking his eardrums. An irritation formed on his nose, too. It ended up just being a skin infection that we treated with an antibiotic cream. It healed up in a week or two.
As we approached his first birthday, it was time to start preparing for surgery number two. We had to wean him off the bottle and onto a sippy cup prior to surgery. The sippy cups could not have nipples. We had to use a flat surface cup to keep things off his palate. They didn’t want anything touching the palate after surgery so that it could heal. I set a deadline of August 24. It took a lot of trial and error, but August figured out his sippy cup prior to the deadline. August was a constant mess while training to drink like a big boy at such an early age!
Surgery number two consisted of having his palate closed and his ear tubes checked. It was scheduled for September 12, 2018. Last time, I went in thinking we would be out the same day. This time we went in prepared to stay three days versus the planned overnight stay.
August was in surgery for close to four hours. Dr. Samson closed the palate and did a little touch up to August’s upper lip. The ENT doctor checked his tubes and replaced his right ear tube. While in recovery, August began to show the same symptoms he experienced after his first surgery. Fortunately, he was older now, and we were able to control his breathing without re-intubating.
The hard thing about surgeries with children so young is knowing when they are in pain and what it is they need. The evening after surgery, we pretty much kept him sedated because whenever he began to wake, he cried and was inconsolable. By the next morning, he started to feel better, and we began to wean him off the pain meds. I had to get him to drink enough fluids to go home. It took all day, but by 7:30 that evening, we were headed home.
The recovery was a little rough. We had a close call at the end of week one when I snagged a stitch on his lip trying to get a shirt off his head. The tough part was three weeks of no crunchy foods. August despised not being able to eat crunchy food and would often reach for our food. He made it through those weeks with just a few tears.
August still has a long way to go, but he is a happy and healthy 15 month old. He is finally beginning to walk, and he is starting to chatter more. His hearing has seemed to improve, though we recently had a tube fall out, which means another surgery may occur sooner rather than later. Speech therapy will begin soon so that he can start to form some words. His only word—and the one he loves to yell—is “Momma!”
As we continue this journey, I know the staff and doctors at the Lancaster Cleft Palate Clinic will have his back.
—Patricia, August’s mom