EMMA'S STORY

A FIVE YEAR OLD WITH HIGH GRADE SPONDYLOLISTHESIS 

On July 3, 2003 our first child was born - a beautiful baby girl who we named Emma.  She weighed 9lbs 2 oz was 21 inches long and was just  the most beautiful little angel we had ever seen.  From the beginning she was a very active, alert and a strong baby.  She walked by 11 months of age and began running shortly thereafter.

 

Two years later our second daughter, Abby, was born and 2 years after that our son, Will, was born.

 

Emma was growing by leaps and bounds and was generally among the tallest in her age group.  She loved her pre-school at Thunderbird and by the time she was 5 she couldn’t wait to ride the bus to school.

 

In November 2009 we noticed our Emma walking with somewhat of a gait and she mentioned that her legs felt “tight.”  We discussed this with our pediatrician but they felt that the discomfort in Emma’s legs was most likely due to growing pains.  Since Emma had a growth spurt about that time we kept an eye on her for the next month, along with getting her new shoes, trying heat packs and using Tylenol when needed to curb her discomfort.

 

By mid December 2009, Emma's gait became worse, her discomfort had grown and now her shoulders and back seemed to be curving so we went back to our pediatrician.  The diagnosis now was possible scoliosis.  It was recommended that we see a pediatric orthopedic specialist, by the name of Dr. Albert Knuth out of Barrington IL.  On January 6th we had an appointment with Dr Knuth and after taking an x-ray in his office he shocked us with the news that Emma had a rare condition called high grade (level 4-5) spondylolisthesis. He then mentioned that surgery in the form of some type of decompression/reduction and spinal fusion was the only option to correct Emma’s spine.

 

Dr. Knuth indicated spinal surgeries were not his specialty, but recommended a colleague of his Dr. Steven Mardjetko who specialized in pediatric spinal surgeries.  Dr. Knuth spoke with Dr. Mardjetko while we were in the office and was able to get us an appointment with him that Saturday.  We will forever be grateful for the urgency which Dr. Knuth exhibited in this situation so we could get the medical help needed for our daughter.

 

We could not believe the severity of Emma’s condition or how quickly this had happened.  We needed to act quickly to prevent any serious or permanent nerve damage.  Considering her condition and age it was difficult to find a surgeon who had any history of doing this type of surgery on a five year old.  Before our appointment with Dr. Mardjetko we got on the web to become more informed about my daughter’s condition and found that the information was scarce since this was a condition usually associated with early teens and few doctors had any experience with Emma’s age group. 

Naturally, our first thought was to go to Children’s Memorial Hospital in Chicago since it was considered a premier children’s hospital.  We had a disc of Emma's x-ray and emailed it to the head Pediatric Orthopedic Surgery at Children's Memorial Hospital in Chicago IL.  A couple days after seeing Dr Knuth we took Emma to Children’s Memorial.  We spent the entire day there and when they saw the severity of Emma's condition they asked that we stay and discuss the surgical option with the head of Pediatric Orthopedic Surgery.  Naturally we stayed and Emma was a real trooper.  His approach was to decompress and reduce through one surgery, pulling Emma's spine all the way back in to place and then inserting rods and screws from L4 through S1.  He also indicated that the surgery should be done in the next two to three weeks due to the severity of Emma's condition. Our concern was that he had never done this type of surgery on a child of Emma’s age.  If it was not, she could possibly suffer more damage in the form of nerve and bladder function.

 

A couple days later, on Saturday we had our appointment with Dr. Steven Mardjetko (pediatric-orthopedic surgery) out of Illinois Bone and Joint Institute in Morton Grove IL.

Dr. Mardjetko was the first Pediatric Orthopedic Spinal Surgeon that we had come across that had experience operating on a 4 year old and an 8 year old child (who was a similar size to our daughter) with this same condition.  He had a different approach to her surgery.  He was very open and honest indicating that he had a plan to do a decompression and reduction with a spinal fusion from L4 to S1 as a first surgery, and then after approximately six months do a second surgery to shorten the rods releasing L4 and removing the screws from L4 as well to give Emma more mobility later in life.  Although we were not very thrilled to hear about two surgeries, the concept made more sense to us in the long run for Emma. Dr. Mardjetko also indicated like the others that due to the severity of Emma's case, we should make a decision in the near future (3-4 weeks) to avoid any additional problems.

 

Even with the short time frame for a decision we continued talking (and emailing Emma's x-ray, MRI & CAT scans) to many different specialists, orthopedics, neurologists, friends and family who had been through different kinds of back issues and surgeries.  We were also checking for different world known specialists in the field of pediatric orthopedics who had specialized in the spine and who had the experience of operating on a 5 year old child with high grade spondylolisthesis.  It was quite disheartening to find there weren't a lot of Pediatric Orthopedic Surgeons who had operated on a child of this age with this severe of a condition.  It is a difficult process when the condition is considered rare but we were fortunate to get information from reputable doctors and our close friends as to who might be a good candidate to operate on our daughter.

 

One name that came up quite a few times from other doctors in the field was a Dr. Larry Lenke, out of St. Louis, MO.  We emailed Emma's x-ray, MRI's and cat-scans to his office to get his opinion on Emma's condition.  We wanted to know if we should be making a trip out to see Dr. Lenke or if we were in the right hands with any of the pediatric orthopedic spinal surgeons in our area. 

 

  It was a very stressful time for all of us, but mostly for Emma who was not feeling well and dealing with long drives to different specialists offices while lying in the back of the car with one of us because the pain was becoming so intense.   Dr. Lenke  had gotten back to us  and indicated that we would be in great hands with Dr. Mardjetko.  Dr. Mardjetko was our first pick, but having the blessing of Dr. Lenke to go with Dr. Mardjetko just solidified that we were making the right choice.

 

Another thing that a neurologist said to us was that we had to be comfortable with our pick of the right surgeon for Emma and go forward.  In the end we decided that Dr. Mardjeko out of Lutheran General Children’s Hospital was the best surgeon for Emma. 

 

Emma had to endure a couple weeks of pain and discomfort and we needed to prepare for the surgery which would be occurring on Jan 21st 2009.  We tried to make it as simple as possible, mostly for Emma.  Between making arrangements for someone to care for our two other children, mentally preparing for what was ahead of us and our concern as to her well-being before the surgery, the two weeks seemed to happen quicker than we imagined.  Throughout all of this, Emma was amazing.  We discussed the situation with Emma as to what would be happening when we took her to the hospital and tried to bring it down to a five year old level.  She had suffered quite a bit, but rarely complained. At this point she was crawling up the stairs in our house and her back seemed to be curved even more.  But, on the morning of her surgery, she was actually excited to go to the hospital because Dr. Mardjetko was going to fix her back so that she could sit, and walk and play again without hurting.  She was so excited that we were a little concerned considering what she was going to have to go through for the next 6 months to a year.  It seemed as though the world stood still during the heart wrenching six and a half hour wait for her surgery to be completed.

 

My husband and I had already planned to stay at the hospital during the time Emma would be recovering.  Our first look at Emma after the surgery made my heart sink.  Her face was so swollen that she could not open her eyes because she had to be on her stomach for the 6 ½  hour surgery.  She was crying when we first walked into the pediatric ICU because she was scared, in pain and couldn’t see because her eyes were swollen shut.  But once we got there and held her hand she seemed to be able to calm down a bit.

 

By the next day the swelling was going down but new challenges had just begun for Emma and for us. Dr. Mardjetko had indicated that Emma would need to be on bed rest for at least a couple months to let her nerves settle down from the surgery. The good news was that she could wiggle her toes which hopefully meant that there was no nerve damage but the nerves needed to heal from the stress of the surgery.  This would unfortunately cause her a lot of pain and she was also susceptible to bouts of uncontrollable crying.  Each day was better and each day was a challenge especially trying to keep your spirits up for yourself, your family and your child. 

 

Emma spent 2 weeks in the hospital recovering from surgery. Day 2 after surgery she was measured and fitted for a brace with leg cuffs that needed to be worn when ever she was not lying in bed.  The pediatric unit at Lutheran General Hospital has some phenomenal individuals that help take care of the kids, from the nurses and doctors to the volunteers. 

 

Although there were some very difficult times for Emma in the hospital, with catheters, IV’s, Physical therapy, a urinary tract infection, medications, a brace, leg cuffs and bouts of crying, there were also some wonderful moments.  Like, the pet therapy program, where Emma was able to enjoy petting and even cuddling with one of the little dogs.  She also was very enamored with the music therapy program where she was able to play a harp at one point and the musicians would come to play songs for her while she was doing physical therapy which was both mentally and physically exhausting for her as well.  She loved doing arts and crafts and would send some of her projects home for her sister and brother.

 

On February 3rd after two weeks at Lutheran General we finally came home.  Emma was restricted as to moving (being in a wheelchair for only one hour per day at first) and we had the hospital bed, potty chair and wheelchair ready for her.  For the next two months she was not allowed to walk and would need to be carried, while wearing her brace whenever she was out of bed.  We decided to put her in the media room which was on the second floor of our house where she would have more room for the hospital bed and potty chair and could also have some privacy when she wanted to rest.  We kept the wheelchair downstairs so she could join the family for meals and get-togethers. 

 

One of the best things to happen during this time was the tutoring that was set up through the school district.  Miss Cindy would come for 2 hours every day, just as though Emma was still going to school (kindergarten without the other kids).  Emma really enjoyed her school time and Miss Cindy was a wonderful teacher.  I think it would have been very difficult to keep Emma occupied and still excited about learning without this.

 

After two months, therapy was begun to help Emma re-learn walking. We had a Physical therapist come to our home twice a week and it was very difficult for Emma.  Initially I believe she was afraid, for so many reasons but being the trooper that she is, she soon began to try and walk again.  First she had to learn to sit up on the edge of the bed, then it progressed to trying to stand, and then finally to taking her first steps once again.  It was a miracle to say the least to see her walk once again after all that she had gone through.

 

Our next big hurtle was her second surgery scheduled on June 4th of 2009.  We were a little concerned that she would remember all the things that happened during her first surgery and it might be difficult to get her back to the hospital.  But, again she came through in great style.  She walked into the hospital like a trooper and her biggest concern was that she wanted to be home to celebrate her younger sister Abby’s 4th birthday that was on June 13th.   Even though she had to wait until noon after not eating the night before because of a mix-up with the rods/pins, she did not complain.  Instead we got a room with a TV and watched some shows and played checkers to pass the time.  I actually got to escort Emma to the operating room at her request and held the anesthesia mask (strawberry flavored, of course) over her little face until she fell asleep.

 

The experience of post-surgery the second time around was so different than the first.  Emma was up and walking after a day and we only spent four days in the hospital this time.  We didn’t need the wheelchair, but she did use the walker for a period of time to gain her strength and stability back.   She only had to wear her post surgical brace for a couple weeks afterwards which was very exciting to Emma.

 

Emma was doing well after her second surgery and had restrictions from athletics and even swimming until her scar was completely healed.  By the end of July 2009 we had Emma in swimming classes and she loved it.  Finally, she could do something athletic and not worry about hurting her back.  Toward the end of the summer 2009 we noticed that Emma’s legs were getting tight and we went back to see Dr. Mardjetko in August 2009.  He noticed that Emma now had scoliosis and with a 26 degree curve and was concerned.  So we were now on another course to correct the curve of Emma’s spine. 

 

We got in to see David at Sheck and Sirus in Schaumburg, IL and he casted Emma to get a custom fit for a scoliosis brace to help correct the now curvature of her spine.  This was very traumatic for Emma, not understanding why this was happening.  She thought the two surgeries would correct her back and she would be fine and now this—it was a lot for a 6 year old to handle at that point.  We got through the appointment and she picked out a neon green brace that she decorated and proudly wore UNDER her clothes this time.  Emma wore her brace for 18 hours per day for about 4 months and at our visit with Dr. Mardjetko we found that her spine was once again straight—it was amazing.  So she didn’t have to wear the brace any longer.  Emma was thrilled to say the least.

 

Since then Emma is going strong.  She was restricted from gym and recess for the beginning of 2009 for first grade, but after her cat scan in February 2010 Dr. Mardjetko allowed her to go back to gym and recess and to participate in most activities with the exception of anything relating to gymnastics. 

 

The cat scan from February 2010 did reveal that there is a small portion of Emma’s spinal fusion that is not completely fused to date, so we are currently using a spinal stimulator to try to encourage the growth of the bone in that area. We will find out in May 2010 if the bone is growing together. 

 

Emma continues to go for physical therapy at Pediatric Place, she is swimming and thoroughly enjoying everything that life has to offer.  She is at the top of her class academically, and is just simply an inspiration to those around her. She is a happy child who has many different interests, who enjoys helping others, has a contagious sense of humor and who is just an all around wonderful person.  She is extremely modest about her condition and her corrective surgery and instead would rather chat with you about a day in the life of a 6 year old.

 

A few words from experience to anyone going through this kind of situation with a child:

 

1. Be thorough and do research---get to know your child’s condition and what it will take to correct it.  Get many professional opinions.

 

2. Be organized---for yourself and your child.  Keep a log of questions going throughout the process and use that written log when speaking to professionals.  Ask others in the family if they can think of any other questions you may not have.

 

3. Second set of ears---at the appointments bring another person and find childcare for other children so that you can get the most out of your visits with doctors or other professionals. 

 

4. When choosing a doctor/surgeon---make your choice based on the facts and the experience of the professional as it relates to your child and their condition. Don’t be influenced by emotions.

 

5. Ask for help—you will definitely need it.  We did, many different times, from many different people and it truly made the bad times not so bad, not only for Emma but for our family as well.

 

6. Take one day at a time, and when it becomes too much take one moment at a time.

 

7. Be as honest as you can be with your child about their condition and what it will take to correct it.  Be honest about their limitations, but creative with other things that your child can do.

 

Thank you to everyone who helped us through this difficult process.  We couldn’t have done it without you and we are eternally grateful.

 

Preoperative X-Rays

   

Postoperative X-Rays