Parenting Cleft Lip and Palate- The Beginning

                                        

Makayla at her check-up...there is an artificial palate in her mouth to help 

with feeding, the string and tape was for easy removal.

Parenting Cleft Lip and Palate- The Beginning

 Hello and Welcome to My Blog “Parenting Cleft Lip and Palate” which is a task in itself and being a mother to a Cleft child is not easy, it comes with its ups and down, good days and bad day, but at the end of the day, things come together to work its way out for the good.  Well, let me introduce myself, my name is Shell and I am a mother, a single mother to my beautiful daughter who is currently 8 years old and was born with Bi-lateral Cleft Lip and Palate in 2014. My daughter is the youngest of four children and being the baby, she can be spoiled at times, but she is a wonderful fun-loving caring child, who would give you anything she have.

One day we were going to one of her Ortho appt. (one of many…lol) and Makayla have to pack a bag full of Barbies and other Knick knacks she loves to carry around, well this day she had some of here play food in her purse, she was so thoughtful she shared some of her play food with her Dr. At first, he was reluctant to take her toy she was offering, but she would not take no for an answer, and her toy she gave him is still in his office.

Well… that was an introduction…lol, now let’s rewind back to 2014, when I was pregnant. My pregnancy was normal as it was with my other kids, the only difference is that I was older, 36 years older to be exact and single, verses my early twenties with my other pregnancies and married. Yet other than that, my pregnancy was normal. That’s what I thought when I went in for my routine ultrasound, (which was not my first ultra-sound, just the one that caught her Cleft…lol) So,  I’m lying on the ultrasound table, its dark in the room, as I’m laying down looking at the screen trying to figure out exactly what I was seeing, trying to get a glimpse of a leg, arm, face etc. the ultrasound technician was pretty much quite the whole time, after about 10 minutes or so, it could have been longer, but as I was laying there, I began to have a funny feeling in my gut that maybe everything was not alright so I asked the technician was everything ok because the quietness felt like something in movie. After I asked the question is everything o.k., she finished up the ultrasound and said, “the doctor will talk to you soon.” Oh my goodness, what?? I felt like I was in a movie or on the set of Grey Anatomy, where the nurse is quiet, then whisk away for the Dr. to give the patient the bad news, was all I thought.

So, as I was waiting for the Dr. to come in, all I could think about was all the possibilities that he could say. When he came in after the wait, which seemed to take forever, he squeezed the ultrasound gel on my stomach and begin the ultra-sound, just like the technician, he was quiet the whole time until he finally spoke, he said “your daughter has cleft lip, I believe it maybe palate too, but we cannot tell until after she’s is born.” Again, Oh my goodness, what! I was stuck in a world wind of thoughts and worry, then the Dr asked me if I knew what Cleft lip and Palate was? Within my world wind of thoughts, I answered him with a yes. I had a basic understanding of Cleft from an encyclopedia I read when I was young.

After I stood up from the table, the emotions were still going, as well as my thought. How did this happen? Why wasn’t it caught earlier? The biggest question was how am I going to care for a Cleft child? I have never cared for a child with Cleft and knew nothing except for what Cleft was and that was not enough to get the job done. So, I did what any other parent would do, I used Google and YouTube to educate myself on what I was going to be in for once my daughter was born.

Most of my searches yielded me with information on feeding difficulties, ear infections, ear tubes, if necessary, problems with speech and speaking clearly etc. After I had read so many, they were all starting to sound the same, and one thing I know or any parent for that matter, is that each child is different and unique, and that’s the case with a Clefty as with my daughter. My research, questions and uncertainty continued all throughout my pregnancy. It did not matter how many questions I asked and how much research I did, my uncertainty was going to continue until my daughter was born, answering many questions like, will she have feeding issues? hearing issues? at this point the doctors could not tell me for sure the severity of her Cleft, only that she had Cleft Lip.

As my pregnancy continued, it progressed as normal, my daughter was a healthy baby during pregnancy, my OB/GYN appts were regular like any other pregnancy, (except I had more doctor appts than my other pregnancies). My OB/GYN appts were every six weeks until I became closer to giving birth. Around five or six months my OB/GYN appointments were moved closer, I was going every two weeks, then down to one every week. During this time, I was also going for ultrasound more often than my other pregnancies. My ultrasound appointments were on the same schedule as my OB/GYN. I had ultrasounds once a month, then once every two weeks, to once a week.  In the middle of all my appointment running, my doctor wanted me to sit down with a genetics counselor to go over the medical history of me and my daughter’s dad, to try to figure out the “why”, well to make a long story short, there was no definite answer as to why my daughter was born with Bi-Lateral Cleft Lip and Palate. The only definite answer is that I gave birth to a healthy beautiful smart strong baby girl, who is now 8 years old.

Cleft lip and Palate is something people never talk about, but it is real. The parents are real, the emotions we feel during pregnancy and after are real, the surgeries and doctor appointments are real, the uphill battle Cleft parents face. I like to think of my life with my Clefty as a journey, a journey that has its ups and down, but one thing I’ve learned is to take one day at a time, smile, take care of yourself, stay strong, because it will get better, there is light at the end of the tunnel and thing get easier.

PRAY, STAY STRONG, STAY ENCOURAGE, STAY POSITIVE….IT GETS BETTER!