I was your typical high school student, loved my art classes, hanging out with friends and of course adored my ‘sweet heart’. Our relationship may have progressed too quickly and six months after dating I found myself pregnant. Seventeen, a senior in high school and pregnant. Emotions ran high at the beginning of my pregnancy. Scared about telling my parents, scared about physically having a baby and just overall scared about, at the that time, what was the biggest mistake of my life. I knew very little about babies, having only held one once. I knew very little about pregnancy. And when I say very little, I mean almost nothing. Word of course spread like wild fire through my small high school. I was into my second month of pregnancy, still keeping it from my parents, when a close teacher of mine confronted me. I felt mortified, but almost relived that the secret I was keeping was about to solidify. Having gone through three miscarriages herself, she knew how important prenatal care is and only wanted the best for my baby and me. She politely told me that she was giving me a week to tell my parents or she would. When my mom picked me up from school I knew that I had to tell her then. I wasn’t brave enough to bluntly say I was pregnant, so I told her I haven’t had my period in almost two months and thought something might be wrong. Her response was “If you’re pregnant you will not have an abortion. I will raise that child myself if I have to”. That night my pregnancy was confirmed through a store bought pregnancy test. I also started taking prenatal vitamins.
My pregnancy was mostly normal considering the circumstances. I was allowed to eat when I wanted, sleep in the nurses office when needed and I had friends lifting my shirt up and talking to my belly between classes. All normal, right? My GPA had never been better, landing a 3.7 both semesters and I was generally in high spirits. My twenty week ultrasound quickly crept up on us and was such an exhilarating experience to see my baby for the first time. The three things I remember most were; having to use the bathroom the entire time, baby wouldn’t turn so we only got a profile view of his face and it’s a BOY (I for sure thought I was having a girl)! High school graduation day arrived thirteen days prior to my due date. I walked down the isle with my honor cords, extremely pregnant and incredibly embarrassed. My due date came and went and finally I woke up with contractions a week after on June 28th, 2003. Labor started around 5:30 in the morning, we arrived at the hospital around eightish, I had an IV of Demerol and was progressing too fast for an epidural (thank goodness). At 10:15 a.m. I was fully dilated and ready to push. After an hour and a half of pushing the moment arrived and Barry was born. I was relieved and happy that the delivery was over, but those feelings didn’t last long. The doctor was quiet, the nurse was quiet and they didn’t lay Barry on my chest like they did in those birthing videos. They didn’t let Brett cut the cord. I began panicking, thinking to myself, “Something is not right, something has to be wrong”. I asked the doctor, “Is everything O.K.?”. “No” he responded. “Your son has a cleft lip and palate”.
I didn’t know what a cleft lip was. I was afraid to look at him, fearing that I wouldn’t love him like I thought I would. Brett saw him first. I asked him, “What does he look like?” “He’s beautiful” Brett responded with tears streaming down his face and in that moment I knew things were going to be alright. The nurse handed Barry to me and Brett was right, he was beautiful, but I couldn’t help but feel sorrow. I was a teenage mother with a child who has a birth defect. I blamed myself. (I should mention that I never took anything or did anything that you aren’t suppose to while pregnant. I avoided medications, I never drank caffeine and I wouldn’t allow my friends smoke around me. The only thing I can think of that caused Barry’s cleft is the lack of prenatal vitamins in my early pregnancy along with the emotional stress I endured during those first months) I found it hard to call friends and tell them Barry was born. My sadness quickly turned into gratefulness. I knew that in the broad spectrum of things, a cleft lip and palate really aren’t a huge deal. By the time we left the hospital I had a good grasp of my emotions and was ready to take on the next challenge.
I don’t remember how we exactly found out about our son’s cleft team at the UW hospital in Madison Wisconsin, but I do remember what a hassle it was to actually see them. At the time, Barry was on government insurance and we had to obtain preauthorization for him to see the cleft team since our HMO didn’t cover the UW clinics. We made an appointment with the team when Barry was just a few weeks old and Brett’s mother and I drove an hour and a half to see them. Once we checked in with registration we found out that our HMO denied our request and so we had to turn around and drive home. A couple of days later I received a letter from our insurance stating that they denied our request because they already had a general plastic surgeon at their clinic. I was in no way going to settle for less! This is my child’s face and they want him to see their general plastic surgeon when there is a team of specialized doctors 80 miles away! Brett and I decided that since we both wanted to further our education, him being a journeyman plumber and I wanting to be a dental hygienist, we would just move to Madison so we could go to college and Barry could see the team of doctors. So, Barry was just about two months old we packed up and moved to Madison to start our new “grown up” life.
Shortly after moving to Madison, Barry had his first surgery (September 10, ’03). I think the first few surgeries are a lot harder on mom and dad. You don’t know what to expect and everything is new and scary. We arrived at the hospital just as the sun was rising. Barry was hungry and not happy. Brett and I felt bad for all the other patients who were also about to go into surgery, because Barry would not stop crying from his hunger pains. These moments felt like torturous hours. Soon, it was time. Time for Barry’s smile to change forever. I was excited for my baby to look “normal” and for strangers to stop staring at his beautiful clefted lip. We kissed our baby Barry good bye and prayed that everything would go well. After a couple hours Barry came out of surgery with tape over his lip, ‘no-nos’ on his arms, and fresh T-tubes in his ears. Dr. Mount declared everything went well. Brett and I were both a little sad to see his cleft gone, not something either of us thought we would feel.
Fall came, winter passed and soon it was time for the “big” one. It was time to repair Barry’s palate. We went through the all the motions and on May 26, 2004, just a month shy of his first birthday, Barry had his second surgery. This time Brett walked back to the OR and held his hand while being put to sleep. It is not an easy task for a parent to do, and it is one thing that does not get any easier with each surgery. Once again everything went well and Barry had a new palate and a tiny little uvula.
In August of ’04 it was recommended for Barry to be screened by the ‘Birth to Three’ program to see if he had any developmental needs. Which, of course, he did in the areas of expressive language and feeding. This is where our journey with speech therapy began. For the next two years we had a speech/language pathologist come to our house once a week for an hour to work with Barry. We loved Donna, and it was sad to see her go when Barry turned three and could no longer participate in the program. However, when one door closes another one always opens. In March, 2006 Barry was evaluated by the Madison Metropolitan School Distract to see if he would met the criteria for speech services through what would be his “home school”. It was noted that his speech intelligibility was significantly reduced by his hyper nasal speech and increased rate and therefore did meet the criteria. In the fall of 2006 Barry started receiving speech services from Mrs. Knaack in, what is now his home school. We went twice a week for 30 minutes during the school year.
This brings us to 2008, the summer before Barry started Kindergarten. It was determined by his team that he would benefit from having another surgery. This time it would be to repair his nose, which laid limp and revise his lip. We thought the palate surgery was “big”, but this was even “bigger”. Dr. Mount explained that she would take the existing cartilage from Barry’s nose and shift it around to make a larger nostrils opening (excuse my lack of technical terms) along with removing some of the scar tissue from Barry’s lip. For this surgery I went back to the OR, and I’m not sure if I will be doing that again. The surgery was suppose to take two hours. After two and a half hours we got a phone call from Dr. Mount. Our hearts started racing and we assumed the worst. It turns out that Dr. Mount completed his rhinoplasty, but was just not satisfied. He did not have enough cartilage in his nose to keep his nostrils from falling down and wanted our authorization to take some cartilage from behind his ear. We, of course, insisted and so she started over and they were in surgery for two more hours. The outcome of this surgery was phenomenal and we were, and still are, very pleased with the results.
Barry started kindergarten with a “butterfly” sewn to the outside of his nose, but he didn’t mind much. He continued with speech therapy and was your typical five year old boy, obsessed with dinosaurs and all things blue.
In December, 2009 Barry started to regress in speech therapy, although he was trying his best to keep the air out of his nose when talking. Mrs. Knaack expressed her concerns to me and we made a special appointment to see his cleft team. It was determined that with Barry’s growth, the overall anatomy changed as well. He no longer had the physical ability to close off the back of his throat when talking, making it impossible for him to progress in speech therapy without another surgery. This whole process, was a two part operation. The first surgery was to remove his adnoids and the second part was to reconstruct the back of his throat. The latter being named a sphinchter pharyngeoplasty. He had these surgeries in April of 2010 and May of 2010, and this series of surgeries was extremely successful with Barry’s hypernasal speech.
September 2010, marks Barry’s most recent surgery. A couple years prior, Barry’s ENT doctor noticed that he ear drums started pulling away from the tubes, creating holes, or perforations. She removed his tubes during our office visit and we waited to see if these holes would eventually close. The perforation in his left ear did close shortly after, however the one in his right (his cleft side) remained and over time continued to grow larger. This large perforation was causing Barry some mild hearing loss, as well as some discomfort while swimming. At the time of the surgery, the perforation had grown so big that his entire eardrum was almost completely gone (there was approximately 10% left). I was informed that with a hole this large, multiple surgeries may be necessary to close it, and they could not be combined with other surgeries.
Present day, summer of 2011, Barry has just completed second grade! He had such a great school year and we were blessed to have such amazing teachers working with him. He graduated from speech therapy in May ’11! What an exciting, but sad day that was. Barry is reading at a level 30+ and is on the forth Harry Potter book. He is so smart, compassionate, open minded and strong willed…the list of adjuctives could go on. As far as the future, he will need more surgeries. He is scheduled to have his tonsils out this August. He will need to have another ear surgery to close the tiny hole that remains. And then onto the orthodontist for a palatal expander and the dreaded bone graft surgery.
I want to leave you by saying, NEVER let your child be defined by their cleft. Everything that we experience in life molds us into who we are today. We let Barry have his moments of feeling sorry for himself. But we only allow moments, nothing more. There are so many negative things that can happen in life and these just aren’t ones that we will allow to consume us. Kids are strong, brave and smart. Don’t let your fears and worries be subjected onto them. Let them experience life open minded and mold them into who they were meant to be.
Peace, Love and Happiness