Jeremiah 29:11
"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope."
The Story of Lauren's Journey starts on 3-21-97 at 4:14 p.m. when Lauren came into this world as a beautiful and healthy 7lb 2 ounce, 19.5” bald baby girl with a little jaundice, webbed toes, a pinky toe on her left foot that shot off to the side and a right foot that was pretty turned in.
The initial treatment of clubfoot, regardless of severity, is nonsurgical. The majority of clubfeet can be corrected in infancy in about six to eight weeks with the proper gentle manipulations and plaster casts. So we started the four days after Lauren arrived with the castings. Lauren had her casts changed weekly for about 4 months. Each time however that little right foot kept bouncing back. The statistics say that Fewer than 5 percent of infants born with clubfeet may have very severe deformities that are unyielding to stretching. These infants will require surgical correction. Guess who feel into that 5%!
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The initial treatment of clubfoot, regardless of severity, is nonsurgical. The majority of clubfeet can be corrected in infancy in about six to eight weeks with the proper gentle manipulations and plaster casts. So we started the four days after Lauren arrived with the castings. Lauren had her casts changed weekly for about 4 months. Each time however that little right foot kept bouncing back. The statistics say that Fewer than 5 percent of infants born with clubfeet may have very severe deformities that are unyielding to stretching. These infants will require surgical correction. Guess who feel into that 5%!
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Although there is some variation in surgical technique, all of the major reconstructive clubfoot surgeries involve extensive soft-tissue release of the posterior, medial, and lateral structures of the foot. The doctors did this procedure on 12-19-97 (just 9 months old). It was during this time that they also removed the little pinky toe on her left foot this was done so that Lauren would be better able to wear most types of shoes without discomfort. The correction, once achieved, is usually held temporarily (six weeks) with pins fixated across the joints of the foot and more casting. Lauren’s second surgery was on 1-9-98 this one was to remove the pins for the 1st surgery.
Lauren celebrated her very first steps on 3-31-98 with a cast on! That’s when we knew how strong our baby girl was and that this clubfoot was NOT going to hold her back! By the end of April the casting stopped and we were left with a little improvement but also the reality that more was probably in store to give Lauren the most functional foot possible.
* * * * * * * * * * * *
Lauren celebrated her very first steps on 3-31-98 with a cast on! That’s when we knew how strong our baby girl was and that this clubfoot was NOT going to hold her back! By the end of April the casting stopped and we were left with a little improvement but also the reality that more was probably in store to give Lauren the most functional foot possible.
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Nothing stopped Lauren she did gymnastics, skied, danced, fished, roller-skated, ice-skated, bowled and did karate.
Surgery #3 11-14-01: Lauren was now 4 because she was having a hard time wearing shoes on her right foot we made the decision to have the pinky toe on her right foot removed so Lauren would then have 4 toes on both her feet. During the same surgery they released her soft tissue again, did a clean up of the scare tissue and proceeded with an open and wedge style osteotomy. They also dissected her web toes. The Osteotomies were then pinned. The surgeon also noted that Lauren’s foot was in a poor equinus (pointed down) position and had varus (turned in) deformity of her foot and ankle. Her ankle was called a ball and socket ankle showing signs of her ankle starting to form the ball portion to the outside of her foot and the ankle having barely any movement. They kept Lauren in casts through the New Year.
For the next couple of years there were multiple follow-ups with the doctors to track her foot. It was determined that Lauren’s foot was not going to make any more positive progress. Lauren was walking primarily on her big toe and pain and discomfort were starting to become evident. Surgery would be inevitable and would be determined based on her age and he level of her pain she was able to tolerate.
We consulted a number of surgeons and they all felt that it would be the best prodigal to wait until about 10 or so when Lauren’s growth would almost be done. It was also noted that Lauren’s right Tibia and femur were showing signs of being shorter. 6-7-06: the limb length was 3.8 cm left longer than right.
So the research into surgery started. Most of the surgeons we spoke to all recommended that Lauren have what is called a Supramalleolar osteotomy (the cutting of the shin bone) repositioning or twisting the bones, lengthening the tibia then using a special frame to help to heal the foot into a better position. Then after more research I found a group of doctors in Baltimore at the Rubin Institute for advanced Orthopedics at Sinai Hospital. We decided it was worth a trip to see Dr. John Herzenberg a internationally well know doctor specializing in a procedure called the Llizarov procedure (Taylor Spatial frame). Dr. Herzenberg studied directly from Professor Llizarov is the USSR and is responsible for the majority of instruction on the technique to doctors around the world.
9-28-07: Meet with Dr. Herzenberg to discuss Lauren. In our meeting with the doctor he explained that Lauren had quite a number of deformities going on in the foot, ankle and limb length. He also noted Laurens knees being knocked (floating inward). The doctor explained that her knock-knees could easily be fixed with the use of an eight plate. The hardware is put into her knees to correct the position. Left in for approximately 1 year until correction is complete. The next issue was the foot. He explained that Lauren would always have a stiff mis shapen foot/ankle but that for function the thing to focus on was the position of the foot. Because Lauren put ALL of her weight on that poor big toe, the doctor felt like the best position for the foot was flat so that the entire foot could sustain Laurens weight rather than the one big toe. The best position would be flat to the ground. He would do this with a U-type osteotomy pulling the foot down utilizing the Taylor Spatial frame. He expressed that the second surgery was not time sensitive but that the eight plate surgery was because the effects of growth.
So the decision was made that this course was the best for Lauren. It meant having to stay in Baltimore for almost three months just Lauren and mom, away for all the family but it was worth it we thought. The surgery was scheduled for 2-6-07 and the Taylor frame correction started on 2-9-07.
We consulted a number of surgeons and they all felt that it would be the best prodigal to wait until about 10 or so when Lauren’s growth would almost be done. It was also noted that Lauren’s right Tibia and femur were showing signs of being shorter. 6-7-06: the limb length was 3.8 cm left longer than right.
So the research into surgery started. Most of the surgeons we spoke to all recommended that Lauren have what is called a Supramalleolar osteotomy (the cutting of the shin bone) repositioning or twisting the bones, lengthening the tibia then using a special frame to help to heal the foot into a better position. Then after more research I found a group of doctors in Baltimore at the Rubin Institute for advanced Orthopedics at Sinai Hospital. We decided it was worth a trip to see Dr. John Herzenberg a internationally well know doctor specializing in a procedure called the Llizarov procedure (Taylor Spatial frame). Dr. Herzenberg studied directly from Professor Llizarov is the USSR and is responsible for the majority of instruction on the technique to doctors around the world.
9-28-07: Meet with Dr. Herzenberg to discuss Lauren. In our meeting with the doctor he explained that Lauren had quite a number of deformities going on in the foot, ankle and limb length. He also noted Laurens knees being knocked (floating inward). The doctor explained that her knock-knees could easily be fixed with the use of an eight plate. The hardware is put into her knees to correct the position. Left in for approximately 1 year until correction is complete. The next issue was the foot. He explained that Lauren would always have a stiff mis shapen foot/ankle but that for function the thing to focus on was the position of the foot. Because Lauren put ALL of her weight on that poor big toe, the doctor felt like the best position for the foot was flat so that the entire foot could sustain Laurens weight rather than the one big toe. The best position would be flat to the ground. He would do this with a U-type osteotomy pulling the foot down utilizing the Taylor Spatial frame. He expressed that the second surgery was not time sensitive but that the eight plate surgery was because the effects of growth.
So the decision was made that this course was the best for Lauren. It meant having to stay in Baltimore for almost three months just Lauren and mom, away for all the family but it was worth it we thought. The surgery was scheduled for 2-6-07 and the Taylor frame correction started on 2-9-07.
The procedure consists of an initial surgery, during which the bone is surgically fractured and the ring apparatus is attached. As the patient recovers, the fractured bone begins to grow together. While the bone is growing, the frame is adjusted by means of turning the nuts, thus increasing the space between two rings. As the rings are connected to opposite sides of the fracture, this adjustment, done four times a day, moves the now-healing fracture apart by approximately one millimeter per day. The incremental daily increases result in a considerable lengthening of the limb over time. Once the lengthening phase is complete, the apparatus stays on the limb for a consolidation period. Once healing is complete, a second surgery is necessary to remove the ring apparatus. The incremental daily increases result in a considerable correction and lengthening of the needed area. I think as a mom the turning of the struts numerous times each day was one of the hardest things I have ever had to do. Causing your child pain in the hopes of a remedy is tough. I would set two alarms a night in order to try and do the turns while Lauren was sleeping. Keep in mind that it was not just one turn at a time there were up to eight turns each session.
To add insult to injury Lauren had daily PT in water and on land to keep things stretched and gain strength where we could. The biggest fear was the possibility of infection at the pin sites. That meant that these pin sites had to be cleaned thoroughly multiple times a day; which I can assure you was not pleasant for Lauren. We however were one of the lucky ones. The entire time all of our diligence paid off and we never had an infection.
So Lauren continued on after healing. She went back to school in May to finish up 5th grade. She was blessed with amazing friends who stuck by her, helped her at school and stuck up for her when the looks and nasty words happened. She had some success with the fixator procedure. Her ankle was totally fused and her foot sizes were approximately 2.5 sizes different. It was not until her freshman year of high school that Lauren actually went to school in shorts and even flip-flops. She tried out and made the poms team; thankful that the turns had to be done on her left foot. But with the positive also came the negative. Lauren was the subject of quite a bit of bullying at the end of freshman year. Her high school was having “Make a difference week” sponsoring and raising funds for some kids who needed medical help. One of the girls needed help for a severe clubfoot. Lauren had enough with all the mean people and decided to put in out there once and for all. She made a video asking for help for Serena and her surgery and the video was shown to the entire school. She inspired her family and so many others.
Sophomore year Lauren transferred to Douglas County High School hopeful that a fresh start with some of her old friends may be better. What a difference a school makes! Lauren's fit at Douglas County was fantastic she shone so much brighter. It was during this year that Lauren's body really started breaking down and the effects of her leg deformity really began taking their toll on her entire body. The discussion on options came up again. The options were pretty limited. She had tried a back injection to help minimize pain but it did not work. Lauren finally decided that it was time to consider amputation. We went to see Dr. Hahn to get all the final information on what would be required and the positives vs. the negatives. We also meet with her prosthetician who we had worked with at length to create the best possible inserts to accommodate Lauren's unusual foot situation. Everyone agreed that amputation was the best thing for Lauren and her body. The decision however had to be Lauren's. Lauren decided that July 9th 2013 would be that day. So her journey will continue from here … I expect GREAT THINGS!