Over the past two (and a half) years of living life with a son that was born with a cleft lip and palate here is what we have learned:
Some days move slow, but all months go fast.
He is the best thing that God has ever given us.
Andrew is so lovely!
It’s been almost two years since I shared an update on our miraculous baby boy, Andrew Bradley, who is not so much a “baby” anymore. When I last shared, he was eight months old. At that time, he had sailed on through the taping of his cleft lip, followed by his lip adhesion and his full lip repair. Ear tubes were necessary at the time he received his lip adhesion at three months old, and that pair of tubes continued to look great when checked at the time of his lip repair surgery. Pretty much, for the first year of Andrew’s life, he met his developmental milestones as expected.
In addition to his cleft, we were also informed within the first month of Andrew’s life that he had a hole in his heart; a Ventricular Septal Defect or VSD. I remember at the time it was discovered, it felt similar to the weight of the world crushing down on us. Andrew’s cardiologist informed us that Andrew’s VSD was relatively small, however, with the location of the hole, she was certain that it would not close on its own. We were also informed that it was a possibility that even if problems did not arise within the first year, that it would be possible that it could be necessary to operate later on in his life.
At this point, as his mother, I had some of the worst thoughts rushing through my mind. Would he grow? Is he breathing okay daily? Will his surgeries necessary for cleft repair even be possible? Is he going to need open heart surgery (that was a scary one!)? Will he be able to navigate through his life just as any other child? WHAT CAN WE DO?
So, we did the only things possible:
2. LOVED him with more love than we knew could ever exist.
And yet again, a miracle was shown to us through our miracle son. Just before Andrew’s first birthday at his regular cardiology appointment, his doctor entered the room following his echocardiogram and spoke these words:
“I don’t know how this happened. This should not have happened.” Thankfully, she quickly followed this with, “The hole in his heart has closed on its own,” or I may have fallen to the floor. Our prayers were answered in a way we did not even realize was possible. God is so good and Andrew is a miracle that has been given to us.
From here, we moved on to his cleft palate repair when he was fourteen months old. Our cleft team had been preparing us for this surgery from the time of birth. So, we had an idea of what to expect, but we also were informed that every child gets through it differently. His plastic surgeon prepared us by letting us know that Andrew’s palate could possibly require donor skin because his cleft was so wide. We also knew that it would be possible that a hole could form in his palate during healing, resulting in the need for further repair. Thankfully, neither of these occurred. His palate repair surgery went smoothly, even though the hours it took to complete seemed like days to us as we waited for him to be moved to recovery following surgery. The hospital stay was longer than any we had experienced thus far. His healing was long and tedious: only liquids, no hard objects that could go in the mouth, arm “no-no’s” to restrain him from putting his hands or anything else in his mouth. We got through it. His palate healed fantastically. He passed his hearing test, following new tubes being placed during the time of his palate repair surgery.
Year two of Andrew’s life proved to be less appointment-filled than year one. He has had checkup appointments with his cleft team every few months. We thought he might need speech therapy at a very young age, but his development has shown us otherwise. At age one and age two he was evaluated by the speech therapist, and it was determined both times that Andrew does not have a need for speech therapy at this time. You just never know (and we’ve learned to try not to predict so much what MIGHT happen).
Around the time of his second birthday, his pediatrician discovered that one of his ear tubes had fallen out. As a result, Andrew’s ENT doctor placed new tubes for the third time and discovered that he had a cholesteatoma formed on one of his eardrums. This cyst caused thinning of his eardrum, and if left untreated, could eventually lead to bone deterioration and possibly hearing loss. His doctor removed the contents of the cyst when tubes were placed, and at his post operation checkup a month later, there was no visible sign of damage remaining from the cyst. We were informed that it is possible for the cyst to return, so we will continue with regular ENT checkups.
Regular dental cleanings and checkups with Andrew’s pediatric dentist have been the newest addition to his treatment plan over the course of year two. Andrew has not had the easiest time with this (and I’ll admit: neither has Mama! I’ve always enjoyed going to the dentist, but not so much when it’s for my screaming child!). Before Andrew turned one, we had his teeth checked as a result of noticing some dark spots on two of his bottom teeth inside the crevices. We were told the dark spots were staining as a result of deep grooves in his teeth and that there appeared to be no sign of cavities forming. A few months after this, at a scheduled dental cleaning, it was noted that Andrew had the start of some decay on multiple teeth. Although we were informed from the beginning that he could face dental complications from an early age, it was still upsetting to hear that our dental hygiene had not prevented this from occurring as we had hoped it would. In an attempt to stop the decay from progressing, Andrew received three SDF treatments. Thankfully, this slowed the decay to a point where we can put off any further treatments at this time, and we have heard that it is possible from these treatments that the need for further intervention on these teeth could be eliminated altogether. We’re hoping!
As you’re reading this, I imagine you’re probably going through your mind thinking something like:
“My child has a cleft, and we had this… and that… but not this…”
“My child has no cleft, and still had this… and that…”
Because that’s what we think, too! As I shared in our first update on Andrew nearly two years ago, when he was born and unexpectedly had a cleft lip and palate, we were scared! And it seems two years later, every time there’s a medical bump in the road, I still freeze up and begin to panic. I still get scared. But what we’ve found is this: We get through it! He gets through it! Yes, sometimes the ‘bumps’ are directly related to his cleft, but even kids without cleft lip and palate have these ‘bumps,’ too. This is the path we plan to continue leading him down as he grows and develops: Everyone has their own story. His story just happens to include having a cleft lip and palate. The positives outweigh the negatives tenfold. So, as we teach him to develop into a young man that is confident in himself and comfortable with who God created him to be, we will always make sure he knows that he is already everything we’d ever hoped he would be. He is our miracle son, Andrew Bradley.