Kaitlyn's Story

Kaitlyn's Story
Kaitlyn is currently in Cast #5. She is treated at Shriners Hospital for Children-Chicago by Dr. Kim Hammerberg

Kaitlyn Gynae was born on June 26th 2009 by C-section, she weighed 8lbs & 9 ounces, she was beautiful. My pregnancy had went very well, with no complications throughout the nine months. I had every reason to believe that she would be born into this world 100% healthy. But to our surprise,  she was born with a
condition involving her little heart.They told us it was called Wolff-Parkinson-White Syndrome. The Syndrome had caused her heart rate to reach the 290's range, within minutes her birth.She was placed into the NICU for 7 days, so they could monitor her condition and find the right medication to keep her heart rate under control.That was one of the hardest week's of my families lives, going home without her was heart wrenching.  But, we got through it together!They found the right medication for her and sent her home, we were able to manage her heart rate very well on her medications.She was followed by her Cardiologist for her first year of life, every 3 months she was checked. In June of 2010, the signs of Wolff-Parkinson-White
Syndrome were dwindling, her Dr. said we could start weaning her off the heart meds!We were thrilled for our little girl, she has been medication free for two years and we have had no further complications. A lot of infants are born with Wolff-Parkinson-White Syndrome and do out-grow the condition. As hard as all of that was, in the beginning of her little life.. nothing could have prepared us for what was to come later.In April of 2010, she was 9 months old.  I started to notice that she had a "hump" on the right side of her back.  I showed family and friends, they all thought it was a hardened muscle and nothing to worry about.I just kept on an eye on it for another month, believing that it was just that.  But, Mama instincts won over and I took her to my chiropractor one day, and asked him what he thought it may be. He held her up and felt her back from top to bottom and said that her spine was in a S shape.  I was shocked and stunned,  I asked if that was called Scoliosis.  I had heard about the condition, but always in teenagers.. never in a baby!  He said yes it was.  We went home just shocked, and really afraid for Kaitlyn.  I spent the next several days researching Scoliosis in young children.  What I was reading was very scary and I felt helpless.All I could find was SURGERY, GROWING RODS, complication rates, deformities.  I think I spend the next two days crying and
grieving for my daughter.I continued to research and finally found HOPE for Kaitlyn,  I found The Scoliosis Outreach Program and read about Dr. Mehta and her serial plaster casts. Using these babies, and young children's own growth to help train their spines to grow STRAIGHT!I finally felt hope for Kaitlyn, for the first time.  I joined the CAST group on yahoo and got in touch with some great people, who helped me figure all this out. We took Kaitlyn to a local Orthopedic Dr. to get her Scoliosis confirmed on May 12th 2010.  This Dr. was very cold and un-reassuring, he told us that her curve was at 32 degs.and that it was most likely progressive.  From there he told us that he would see us again in 6 months and we would see where she was
then. He said we needed to go to our local hospitalto get a MRI done, to see what may be causing her Scoliosis.  She did have an MRI done in May of 2012 of her entire spine and brain. I would NOT accept this waiting and watching plan for my daughter. I knew she would get worse, he just said it was a progressive
curve.We thanked him and moved on, we already knew what the plan was for treating Kaitlyn's Scoliosis. Catie, our dear friend whom we met through the CAST support group, got us in touch with Linda Cree and Shriners Hospital of Chicago. We went to Chicago with Kaitlyn and the set of xrays we were given by the local Orthopedic Dr. who diagnosed her, on June 2nd 2010.There we met and spoke with Dr. Sturm and Linda Cree,  we were so warmly welcomed by this Dr. and nurse and all the staff there. We felt SO blessed to have hope and a plan for our daughter.  Dr. Sturm had the MRI results from our hospital faxed over to his
office,  he was the one to readthe results of Kaitlyn's MRI to us.  It showed no spine anomalies or tethered cord, but it did reveal a small Chiari malformation.  We were upset to get another new diagnoses, but thankful that was all that was found.  Dr. Sturm told us that we needed to get in touch with a Pediatric Neurosurgeon to see how bad theChiari was and if it needed to be addressed before we started casting.  We went home and got her first apt. with Dr. Steven Hamm, chief Neurosurgeon at The Children's Hospital of MI about a month later.  He told us then that her Chiari was small and that it did not need immediate surgery.  HUGE relief us.  She was cleared by Dr. Hamm to start casting.We went to Chicago for Kaitlyn's very first cast in September of 2010.  She was at 53 degs out of cast, and with her first cast.. Dr. Sturm got her to 10 degrees IN cast!

We were beyond thrilled for this news! Our first casting day was hard.  It was difficult to get used to seeing and holding our daughter in a plaster body cast.But the staff and nurses at Chicago Shriners made us feel so welcome and cared for that day.Kaitlyn went home and had to learn to crawl all over again, but she conquered that in just two days.  She was lightning fast in her little cast.She bounced back so very quickly, we were amazed by her strength. Children so are resilient! Kaitlyn was very sick all throughout the winter of
2010, she got constant colds and bronchitis. This greatly set us back with casting. She
went several months out of cast, because of being so ill through out the winter.

In April of 2011, her Neurosurgeon ordered another MRI to check on her Chiari.  We were called to come into his office to discuss the MRI results.  He told us that her Chiari was greatly worsened and that we needed to have the decompression surgery done.I don't think my husband and I had ever felt lower in our
lives than we did back then.  We were scared beyond imagine and very concerned about Kaitlyn.We were facing a very serious surgery for our tiny 23 month old baby girl. Just when we thought all was finally getting back on track.. another obstacle for Kaitlyn. The Dr. told us that it would most likely help her Scoliosis to have the surgery done as well.  We have read that many children/ adults have Chiari with Scoliosis. We
agreed to the surgery and she had it on May 12th 2011.  She did very well with the surgery there were no complications and she was in the hospital for 3 days.  It took her 8 weeks to heal and recover from the surgery.  It was hard to watch her recover, we really wanted to get back on track with casting.  We were given a brace for Kaitlyn to were while out of cast.We were very thankful for that!  Finally on July 19th 2011 were given the green light to get back with casting in Chicago. She got her 2nd cast put on ,7 months after her first
cast was put on.  Even though it was such a LONG time in between casts she hadn't regressed as greatly as we thought she would. She was 62 degs out of cast and they got her to about 23 degs. in her 2nd cast. Kaitlyn has had 5 casts in total.  Dr. Hammerburg has gotten her to 17 degs. in the last few casts.  She is currently 43 degs. out of cast, with a large lower curve.  She is currently in cast number 5 and is 14 degs in cast. She is making progress, but slow progress.  It has been hard to have consistency in her casting, because of her constant sicknesses and surgery recovery time.

Kaitlyn's Neurosurgeon had recently ordered another MRI to check on her spine/spinal cord.  On May 9th of this year.We were told to come into his office to discuss the MRI results. I knew right away that this wasn't going to be good news, and I really struggled while waiting for this apt.On May 29th of this year we were told that Kaitlyn's latest MRI scan has revealed a tethered spinal cord. Again another HUGE shock for my husband and I.It has seemed as though Kaitlyn  has taken 2 steps forward and 5 steps back.  Her Neurosurgeon has told us that she would need surgery to de-tether her cord.Also, that we most likely wouldn't see a lot more correction of her curve, until this was taken care of. We also learned that if left untreated she could start to have very scary problems with her legs, bladder and/or bowels, that could not be reversed.We are facing yet another scary surgery with our daughter, exactly one year from her Chiari surgery. While it just seems so unfair and hopeless, we are thankful to Godfor showing us this problem.. before things were to get much worse.  We plan on having the surgery done sometime this June or July.Kaitlyn is still currently wearing her 5th cast, and will do so until surgery day.  We are very hopeful that this surgery will go smooth and that it will help her large lower curve.  She will be re-casted with cast number 6, once she is fully healed from the de-tethering surgery.  We were told that over all recovery time is only a couple of weeks. We have been through SO much with our sweet baby girl, and we may never know why.  We have felt so low, at so many times during her nearly 3 short years of life, but we have also grownas adults and as a family. We have learned SO much just by going through this with our daughter. We have been blessed to meet such wonderful friends and families going through some of the same things with their children, and we have such a support system through them.We do not feel alone!   We have been blessed to have Chicago Shriners and Dr. Sturm to care for our daughter.  We have been blessed to see a great Neurosurgeon at The Children's Hospital of MI.Most of all, we have been blessed beyond measure to be the parents of such an amazing little girl.

Kaitlyn's story was lovingly written by her mommy, Rachel.  Kaitlyn and family are expecting a new baby sister in the next few weeks!

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  • Rachel, so glad you are getting more accurate info now.

    Learn more about the special combination of Chiari/tethered cord/scoliosis, spinal bifida occulta, and heritable disorders of connective tissue on the yahoo support group at ChiariConnectionInternational.

    Good luck with your sweet little girl's treatment, and best wishes with your new baby.

  • All of us at the International Chiari Association (ICA), a nonprofit organization, are so proud of Kaitlyn Gynae. She has so much courage. For those interested in learning more about Chiari, please visit our web site at www.ChiariAssociation.org . Our web site also has links to our Facebook page and YouTube Channel.

    Thanks, Rachel, for posting this article as it also brought awareness to Chiari at the same time.

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