Kenna was 10 months old at the very first Kenna Cup. This fall 2016, she will be entering 3rd grade and continues to thrive as expected. The procedure she underwent as an infant has only left behind a small bump on her forehead, which remains covered with her beautiful red hair and causes no problems. Even when she's running around on a field or court, it is rarely noticed. Kenna absolutely loves sports! Basketball has become her favorite sport to play and watch. If she could attend or manage to watch every Dallas Maverick game, she would without hesitation! She aims to be the best in everything she does and is a valued teammate in soccer and softball as well. It is her caring nature and readiness to help others, however, that makes us most proud. Kenna has a kind and generous heart, is great with her siblings, and we are very honored to be her parents!
We thank you all for checking in on Kenna's progress and for supporting Kenna's Kids!
Kenna was 10 months old at the very first Kenna Cup. Since then, she has grown to become a beautiful 5 year old inside and out. At home, she spends a lot of time with her sister and brother and is very nurturing to both of them. She is also quick to help any time she can. If you have ever received an envelope in the mail containing Kenna's Kids documents, Kenna is likely the one who sealed it. She always loves having a "job" to do. In the fall, she will be attending Kindergarten and will play her 5th season of soccer. While she is a calm, sweet and smiley child most of the time, she quickly transforms into a tough leader on the soccer field. She loves competition and prefers to wear tennis shoes to preschool instead of sandals or boots because she "wants to be able to run as fast as the boys". She is focused and determined to be the best in all she does.
Kenna's 5 year post-op check up with the craniofacial surgeon is August 2013. She does have extra bone growth on the right side of her forehead as a result of the surgery, but it is covered by her bangs most of the time and causes no pain. For now, she has embraced her "bump". When it is noticed by others, Kenna uses the opportunity to tell them about the surgery she had "a long time ago when she was little". In fact, her 5 year old version of the surgery has become quite an interesting conversational topic at the preschool playground.
We thank you all for checking in on Kenna's progress and for supporting Kenna's Kids!
Kenna was born with a form of craniosynostosis where the metopic suture running from her soft spot down to her nose was abnormally fused shut. Her condition, however, was not immediately recognized at birth. Rather, when she was close to 2 months old, we began to notice a prominent ridge running down the middle of her forehead where the suture was closed. Although our pediatrician dismissed our concerns at that time, the ridge continued to be a nagging concern and we made a point of mentioning it again during her 4 month check up. We were once more told that the ridge was nothing to be concerned with. In fact, we were assured that the ridge would slowly disappear after about 2 years.
Meanwhile, Kenna also had some skin problems that ultimately led us to visit another pediatrician when she was 5 months old. Upon our visit with the new doctor, we also pointed out the bothersome ridge on her forehead. The second pediatrician was not sure there was a definite problem with Kenna's skull, but she did feel that it was best for us to go ahead and take her to a craniofacial specialist.
During our first visit with the specialist, we were quickly given Kenna's diagnosis. In addition to the craniosynostosis resulting in a visually misshapen skull with narrowing of her eyes and forehead, the restriction of her growing brain was likely creating raised intracranial pressure. Surgery was the only recommendation for giving her brain the room required to function normally. She needed an "anterior cranial vault remolding" and a "posterior split skull cranioplasty". The description of the procedure entailed cutting her skull open from ear to ear across the top of the head, removing the front part of the skull, breaking apart the prematurely fused bone and remolding it before placing her skull back together. Additionally, we were informed that the most detrimental risk of the procedure involved loss of blood. Therefore, our craniofacial surgeon also recommended that Kenna receive weekly injections of procrit beginning 4 weeks prior to her surgery date because his research showed that 50% of infants receiving the injections avoided the need for a blood transfusion. As the surgeon talked to us, we sat completely stunned with all that we were being told! It was difficult to accept his assessment after we had just been told only 2 months earlier by our first pediatrician that she would "outgrow the ridge".
After getting past the initial shock that the ridge was actually indicative of a serious skull deformity, we realized that we were blessed with still having enough time to schedule both her surgery and procrit injections to occur at the age of 9 months where results of the procedure had been shown to be optimal. We also realized that we still had enough time to research everything we could about the different surgeons specializing in cranial vaults, the use of procrit, blood transfusions, and the procedure of gathering donor directed blood. Additionally, we chose to meet with another craniofacial surgeon as well as a neurosurgeon for 2nd and 3rd opinions. In each meeting, the diagnosis and course of treatment were confirmed and all of the research led us to back to the first specialist/surgeon. He was clearly the most knowledgeable surgeon regarding cases such as Kenna's and his methods were undoubtedly the most e ncouraging. Ultimately, we felt the most comfortable with all of his recommendations throughout the entire process.
Kenna received her first procrit injection on July 15, 2008. Her body seemed to handle the injections well and she had no adverse reactions. By the time of her surgery, the procrit had given the desired effect of raising her blood volume in addition to thickening her blood. At last, Kenna's surgery occurred on August 6, 2008. She was with a surgery team consisting of a craniofacial surgeon, an assistant craniofacial surgeon, a neurosurgeon, anesthesiologist, and assisting nurse.
Handing her over to the OR nurse and seeing her led away with a slightly puzzled look on her face is an image we will never forget! After about 4 hours we were finally able to be with her again. Thankfully, she had done great through surgery! Although she did lose quite a bit of blood, she did not need a blood transfusion, which was a huge relief. Initially, her swelling was minimal and she was sedated with morphine in addition to the anesthesia from the surgery itself, so her first night in the PICU was very smooth. By 4a.m. in the morning, however, her swelling had reached the point where she could no longer open her eyes and it continued to worsen for another 2 days. Her temperature regulating mechanisms were also affected by the surgery, so her body temperature was staying at 102 degrees and higher. Therefore, the nurses kept Kenna in only a diaper with no covers to prevent her temperature from elevating even more. Meanwhile, we were shivering in her hospital room with jackets and blankets on. Fortunately, the higher temperatures seemed to go away within the first 2 days in the hospital but it did take a few more days at home before her temperature was completely back to normal.
After spending a second day in the PICU, she was moved to the regular floor for her 2nd night in the hospital. Her pain that night seemed very difficult to control and consoling her was challenging with her head and body as swollen as it was. We finally noticed drainage out of her right ear in the morning and found out that it was due to a ruptured ear drum she sustained in response to an ear infection. She was put on antibiotics right away and given Tylenol with codeine to control the pain, which finally gave her some much needed relief. With her ear infection discovered and under control, we were able to take our very swollen baby home only 2 days after having undergone such an extensive surgery.
Although she was unable to open her eyes again until the 4th day post-op, she continued to amaze us with her happy spirits. She enjoyed all the comforts of home and especially loved splashing water, tearing apart toilet paper, and smearing her hands in baby food. Her 3 year old big brother, Auston, was also an extra comforting voice and showered her with a lot of extremely careful hugs. In addition, her incision line looked as beautiful as an incision line possibly could. The surgeon had taken special care to create a wavy line so that her hair did not part straight across her head. In fact, when her hair was dry, the line was hardly even visible.
We were all excited when the swelling went down enough for Kenna's eyes to open again. Once that had occurred, the swelling seemed to rapidly disappear and while she maintained some swelling for several weeks post-op, it was really only noticeable to us. We were able to go about our normal routine much quicker than we had expected! At 8 weeks post-op we re-visited her craniofacial surgeon and obtained new measurements on her skull. The surgery appeared to have been a success...yay!
We will go back again 1yr post-op for more measurements and we fully expect to find that her head has continued to expand normally since having the surgery. Afterwards, we will go back at various intervals until Kenna enters adulthood in order to be sure her skull has appropriately accommodated her growth.