This Month's Featured Family!
I know that I am not unique in the whole experience of life with a cleft, but I have found that not many fathers get involved in the whole support group side of things. I know that mothers are more often seen as the nurturers of our children, but as a father, this has been an emotional experience for me as well. Here is a background on what we have been through.
We first found out about Conner's cleft while he was still in the womb. We knew we were having twins, which meant that my wife had to have an increased number of ultrasounds. During one of these
ultrasounds they thought that his brother Hayden was developing fluid around his heart, which prompted a trip to the University of Minnesota Medical Center for a 3D ultrasound. It was there that we found out the Hayden's heart was fine, but they saw that Conner would have a cleft. My wife, having grown up around her families group home business and working for several years as a special ed teacher, knew how extreme birth anomalies could be. The news of a cleft was not good, but we also knew that it was not the end of the world. This really allowed ourselves to be prepared mentally.
The birth of the boys was pretty straight forward. Our biggest concern was making sure that Conner's birth anomaly didn't overshadow the excitement of the birth of our twins. Our family and friends were great about not letting this happen, just giving love and support to our new bundles of joy. The general public, although most with good intentions, were another story. Having brand new twin babies immediately gives you "celebrity status". I don't know if it was the double stroller we had or what, but no matter where we went or what we were doing, people wanted to come up and see the two cute babies, because we
It feels really good to be able to share this with people who are just embarking on the journey. Hearing about others going through this made it a lot easier as well as knowing that we are not the only ones that are experiencing this. One other piece of advice I have is to not let your child's cleft overshadow their life. Because Conner has a twin brother who we don't want to feel left out of love and attention, it has made us conscious of the fact that it is not about clefts, but about having happy healthy children who's only job is to grow up in a happy loving home.
all know that two is cuter than one. Then they saw Conner. Most people were kind, a very few said some not so kind things, but with that kindness came pity and the over used phrase dripping with sadness "you know they can do wonderful things nowadays". We understood that they were trying to lift our spirits, but after the 50th time (not an exaggeration), it can really started to grate on our nerves.
Handing over Conner for his 1st surgery was the toughest thing I have ever done, even though we are lucky enough to be at the Mayo Clinic here in Minnesota. Being at a world famous clinic has been a huge stress reliever, and our cleft team, headed by Dr. Ricky Clay, is one of the best in the country. We actually had a Latham device (a pinned on retainer) put on for our first surgery to reduce his cleft before they did the lip repair. That made it a little easier when it came time for his lip repair. I have to say though, what really made me get choked up was seeing him after that lip repair. It almost felt like I lost my little boy and another one was just born in his place. I still miss his wide smile and how it made him giggle when he used his tongue to play with his cleft.
I have been most amazed by how quickly he has healed after these procedures. We even had a miraculous recovery after his last surgery which repaired his palate. We expected at least a few days in the ICU and up to a week on the pediatric floor. He surprised us and was eating crushed popsicles and Jell-O 6 hours later and was sent to the pediatric floor less than 24 hours after that. There he was almost immediately disconnected from his IV and all of his monitors and he went to play in the Child Life room with his brother. He wasn't even slowed down by his casts (he was too tough for the no-no splints.) He was then discharged
Feature of the Month
Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014
Conner, a Twin
Unilateral Cleft Lip and Palate
A Father's Perspective...
A piece of advice I would like to pass on is to take lots of pictures before and after. We even used our video camera to capture all of the friends and family that came to support him, even though we and many of them live over 7 hours away. I was fortunate that I grew up in the area and still have most of my family there. Our doctor really encouraged lots of family (healthy of course) around, and it really did take the burden off of us. Conner needed to be held and comforted a lot, and everyone was more than happy to take their turn. (Both of his Grandpas seemed to be the only ones he would sleep for) We also had the added bonus of having Conner's fraternal twin brother
staying with us in the room. He seemed to sense that something was going on with his brother and was the perfect baby during this time.
We also set up a website so that we could download pictures as we took them. It was an easy way to keep everyone who couldn't be there in the loop as to what was going on. His site is at www.babysites.com/sites/johnsonhaase. My wife has continued the site to keep people updated with not only Conner's progress, but also his brother Hayden's.
Our twins just turned 17months, and we have finished the year with 4 surgeries under our belt. I have to say the last couple were the easiest, especially with seeing that although mom and dad were stressed, Conner happily left with the anesthesiologist, playing with his stethoscope and not caring about what was happening or where he was going.
discharged, less than 48 hours after his surgery. We were told that this was not typical, but it just goes to show you how amazing kids really are.