I made this site for anyone who is looking to learn more about Klippel-Feil Syndrome. Our daughter, Kassandra was diagnosed at 2 weeks of age with KFS. Later, she was also diagnosed with Spina Bifida & Scoliosis. I spent about 4 years searching for information on these conditions and it wasn't until we got our computer and access to the internet did I finally learn exactly what they were, their implications and how it might affect her life.

 

 

When I found out that we were having a baby, I must say that I was a bit shocked. When I went down to my husbands place of work and told him, he too was in shock as he walked head on into a hoist (he is a mechanic). I can honestly say that through out the entire pregnancy, neither one of us had considered the thought of our child being born less than "perfect". When the time came and we went to the hospital, everything was going as planned--the labour pains every 5 minutes and Shane was right there with me. After 12 hours, it was decided by our Doctor that the baby needed to come out NOW as it was in fetal distress. I was then taken down for an emergency c-section. Our gorgeous baby girl was born weighing 6Ib 15Oz and had the most wonderful head of hair. It was shortly after her birth that the Doctor's noticed some irregularities and had x-rays taken. The films were sent to BC Children's Hospital where they were looked at by a specialist. It was then that she was diagnosed with Klippel Feil Syndrome. It came as a total shock to us and to be honest, we were devestated by the news--as was our entire family. I cried, blaming myself that somehow I was responsible and thinking "Why us? We are good people!" I knew that I was not being rational but I couldn't help it. I found myself a victim of a cruel twist of fate and couldn't stop thinking about it. Then one day, I woke up and thought I am NOT a victim...I have a beautiful daughter and how fortunate I am to have her. And you know what? She is perfect!!

 

Now, onto the reason why you came to this site. Klippel-Feil Syndrome is characterized by congenital fusion of two or more cervical vertebrae and may be associated with other organ system anomalies such as:

1)Spina Bifida--which is a latin term for 'open spine'. Medically it refers to a birth defect in which the skeletal structure of the spine is formed incomplete. There are 3 different types and they are Myelomeningocele, Meningocele and Occulta.

2) Scoliosis --which is the curvature of the spine. Out of 1215 patients with KFS, 25% had congential scoliosis.

3) Urinary--most often, the patient is missing a kidney.

4) Sprengel's Syndrome --failure of the scapula to descend into the shoulder which can be caused by a number of reasons. ie--too great an intrauterine pressure, defective musculature of the scapulothoratic region, abnormal articulations of the scapula with the spine (omovertebral bone) or arrest of development due to ineffective muscular tension.

5)Heart Anomalies

6) Deafness

7)Sykinesis--which is mirror motions with your hands. This tends to decrease after the age of 5 and with the aide of therapy.

8)Cranio-Cervical Abnormalities--Includes C1-C2 hypermobility and instability, Basilar Invagination and Cervical Stenosis at or below the instability. This also includes Arnold Chiari Malformation.

Symptoms of Klippel-Feil Syndrome may include low posterior hair line, webbed neck, short neck, restriction of neck movement, facial asymmetry or torticollis. If you feel you have any of these medical conditions, please consult your Health Care Provider. Kassandra has been to many Doctors and has had various tests done such as a CT Scan, x-rays and an MRI. She has especially received excellent care from Dr.Reilly andDr.Brown who both work at B.C. Children's Hospital.

As of March 2003, Kassandra became a patient at the Shriner's Hospital for Children in Portland, Oregon. Our first visit was in March 2003 and it was great! We flew from our home to Vancouver where we then rode on the Care Cruiser to Portland. The ride was relaxing and the bus is definitly set up for children. There are movies to watch, games to play, books to read and snacks to munch on. The host/hostess were volunteer's and attended to our every need. They were more than willing to answer any and all of my questions. When we went to the hospital for her appointment, she was treated with respect. The Dr's and nurses spoke directly to her and asked her questions instead of acting like she is not there and asking me the questions that she is able to answer. We were in Portland again in September 2003 and are due to go again in the summer of 2004.

Kassandra had her appointment in July (2004) and we were informed that she will require surgery to try and prevent further damage due to the scoliosis. Even though we always knew this was a possibilty, it still came as a shock. We are now on the waiting list and she will most likely have the surgery in the spring or early summer.

We got notice on October 6th that her surgery has been scheduled for November 1st. After waiting for 15 months for this, now that it is here, I don't want it to be. I wish we could go back to waiting...Anyway, we are now planning our lives around the surgery.

Kassandra's surgery took place on November 1,2005 as planned. I can definitely say that I'm glad it is over. She was discharged from the hospital on Nov 10th and we flew home on the 11th. We had a follow up appointment on Dec 22, 2005 and again on March 9, 2006. Her spine is healing nicely and she no longer has to wear her neck brace. She was VERY happy about that..LOL We have to go back in 4 months for another follow up appointment but I'm sure there will be no problems. It was very stressful but I am glad that we had it done.

 

As you can see, we have a lot to deal with and are constantly concerned about Kassandra. She has just started grade six this fall and I am worried something might happen when I am not there. I know...I know...I am a Mom--that is my job to worry. In actuality, we are very lucky. Kassandra is a very loving child who walks, talks and loves to bug her little brother Christopher. When we were first told of Kassandra having KFS, we did not know what to expect. All the literature we could find suggested that she might not walk or talk, could suffer from heart,kidney or liver failure and could possibly be in a wheelchair. We decided right then that this was our baby and we would do anything to give her the best medical care there is. We love Kassandra just the way she is. I never expected to have a child with special needs but she has taught us so much that sometimes I think God sent her to us not because she needed special parents but because we needed a special child.



This is Kassandra, her brother Christopher, Me and their Grandma in Portland a few days before her surgery. Her Dad is taking the picture.


























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