We were so excited to get a glimpse at our 20 week old unborn child.  We looked at the ultrasound and were joyous to learn that it was a boy! Our joy was short-lived as the ultrasound technician kept coming back to the baby's face.  Then I noticed that there seemed to be a space between our child's nose and lips.  I asked the tech if he suspected a cleft and he confirmed that he was suspicious, but he couldn't tell us for certain until the radiologist looked at the pictures.  My husband Tony nearly fainted from the news and my heart sank as we sat alone in the room waiting for the confirmation of the birth defect.  We both were praying that the ultrasound was somehow wrong, but I knew I saw the clearly visible space in the lip.  The doctor came in and told us that there was a cleft lip and most likely cleft palate detected and they were going to check for other abnormalities.  He said that many times they find other conditions on the scan because there are hundreds of known syndromes and other anomalies associated with cleft lip and palate....NOT something we needed or wanted to hear at that point in time!  I had been teetering on maintaining my composure, but knew I was about to break down at anytime.  The radiologist checked our baby thoroughly from head to toe and saw no other "abnormalities".  We were in a state of shock and when it came time to ask questions, our brains were a jumbled mess.  The doctor left and gave us no other information.  We were just sent on our way to deal with this unbelievable, sorrowful news on our own.

I broke down the minute we hit the door of our car.  My crying and wailing was continuous.  I kept asking God, "Why? Why? Didn't I do everything right?" I had an indescribable feeling of sadness and despair.  I remember crying for about 3 days.  When I reached the point where I could cry no more, I decided to learn more about cleft lip and palate.  I found helpful websites and I kept looking at the pictures.  The pictures were overwhelming at first as I wondered what MY baby was going to look like.  I remember reading non-stop anything and everything I could get my hands on about clefts.  CleftAdvocate was a site that I found to be extremely helpful and that is where I learned about cleft teams. 

Did Spokane have a cleft team?  The only person I knew to call was my obstetrician.  He hadn't heard of a cleft team, but referred me to a terrific pediatrician who was helpful and comforting.  He have us the number of the Public Health Nurse for Children with Special Heath Care Needs.  I finally felt as if I was going somewhere in my quest for information. 

We met Laurie Vessey about 3 weeks after our ultrasound and I felt as if I had met someone who would save me from the despair I felt.  She is truly a Godsend!  She gave us great information, showed us pictures of local children's before and after pictures and gave us a name of new parents of a baby who was born with cleft lip and palate who were open to talking to other parents about their experiences. 

I remember being so nervous to call the Ullman's.  I spoke to Lori on the phone and her openness and empathy was just what I needed.  She knew exactly what I was feeling and invited us over to meet their daughter Sierra.  When we finally met, we immediately saw that despite the obvious open spaces in her lip and nose, she was beautiful and you quickly forgot there was anything different about her.  I felt I could ask Lori the really hard questions I had.  Questions that seemed awful to think about with your own child; for example being nervous about taking our baby out in public or how you or family would react when you first see the baby.  Lori candidly answered my questions and talked to me without judgment, because she too wondered the same things. That was a major turning point in how I dealt with Kolin's cleft.  I knew at that point, that I too would overlook my baby's cleft and love him for who he was.

I was still really nervous about how my son was going to look.  I wanted to see his face and be prepared for it.  Somehow I thought this would help me when I first saw him.  We had a 3D ultrasound and got a better look at his cleft at 30 weeks.  I don't know if it's because we had time to "digest" the news of the cleft or what, but we actually didn't react too much when we saw him in 3D.  We were really amazed at how big his cheeks looked though!!!  I felt it was a way to actually see him as a baby and not just a 2 dimensional image.  I started to get very excited to meet him.

Kolin arrived nearly 3 weeks early and we were so surprised that he had an incomplete unilateral cleft lip and a submucous cleft palate.  A submucous cleft has the soft and hard palates in tact, but the muscles under the skin are cleft.  Kolin was able to eat normally and was even able to form enough suction to breastfeed.  I knew we dodged the challenging feeding issues which is one of the most difficult aspects of having a newborn with a cleft.

I loved Kolin from the moment my eyes hit his little face!  My biggest fear was to be embarrassed of my own child.  To be honest, that thought never occurred to me after I held him in my arms.  Everyone embraced him as if he was like any other baby.  We would occasionally get the stares, but for the most part, people were kind and inquisitive about his cleft.  Being a teacher, I prepped my third grade students in my class all about cleft lip and palate, so when they met Kolin it was no big deal.  I found that educating people about cleft lip and palate made me feel better, as if I was contributing something to make Kolin's life better.

Kolin had his lip repair and first ear tubes when he was 10 weeks old.  I remember looking at him in his crib that morning thinking I would never see his little face the same way again...it made me sad in a way. The surgery lasted about 3 and a half hours.  Everyone I spoke to about the first surgery told me that looking at your baby for the first time after surgery was like learning to love a whole new face.  Boy were they right!  I kept looking at him in amazement.  Kolin smiled with his new smile within hours after the surgery.  I LOVED the new smile my son had, but I will always cherish the memory of his wide smile!

We were very fortunate to not have palate complications. Still, Kolin has his share of obstacles that are common with children with clefts.  He doesn't hear well and needs tubes to hear effectively.  This affected his speech and had a speech delay. He saw a speech therapist twice a week. He has been exited from speech after a year since he is now right on target for kids his age. About 50% of children with submucous clefts will have a nasal speech quality and will need a palate repair. His speech does not appear to be affected by the submucous cleft, so we dodged the palate surgery. Kolin has an alveolar cleft in his gum line.  It's small, but impacted his teeth in a big way!  His whole midline is off center and he has an extra tooth that came in between two others!  Luckily it came in completely sideways, so it takes up less room in his mouth!  He may need a bone graft down the road to give his adult tooth above his cleft gum line something to grow through.  Those are the 'wait and see' things that you take one day at a time. 

Kolin had his first lip revision when the summer he turned 2.  He did very well with the surgery and the surgeon was conservative with the amount of tissue she cut down.  I thought he would touch his stitches all the time, but he was a very patient little guy with his "owie" lip.  What didn't happen the first surgery, happened with his second one!  I once again called upon my cleft family friends to help with what to expect in his healing. I learned that each surgery has its own set of challenges!  It seems Kolin's body grows a lot of tissue to repair itself.  Just when we think his lip looks really great, his body keeps producing more tissue and creates a bulge of extra tissue in the lip!  Kolin also has problems with scarring.  His scars seem to keloid (raise above the skin). Kolin has had 2 more lip revisions since he was 2 and has gone in numerous times to have steroids injected into his scar to try to keep it from keloiding.  Luckily, we've had all his surgeries at Sacred Heart Childrens' Hospital and they are great with the kids going into surgery.  Kolin thinks it's fun to go to the playroom at the hospital and loves to ride the cars and wagons there.  Everybody seems to know him there since he's one of the "regulars" and they can't believe how he runs around like he owns the place!  So, for now, Kolin has had positive enough experiences with his surgeries that it doesn't seem to faze him. 

Now, after several years and many revisions, I can hardly remember Kolin's face before the surgeries. He's my rambunctious, happy- go- lucky little boy!  He takes his obstacles in stride...I should learn from him! Each time he goes in for a surgery, I wonder and worry in anticipation of what he will look like.... as if it really matters in the big picture. His spirit and personality are the most beautiful things about him! I know that he will continue to have more procedures as he grows and it doesn't get any easier.  I'm fortunate to have met great families and providers who will be there for our family as we continue through the odyssey of cleft lip and palate. 

I hope that reading Kolin's story touches your heart and it gives you some comfort in learning  that there are other's out there who have traveled the road that lies before you.  The road is a long one, but it's a much easier journey if you don't go it alone.  I hope Spokane Smiles can be a connection for you to get answers and inspiration!  

-Kari

Click here to view Kolin's website!

View a photo story of my changing smile!

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