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 minuets of 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. Kaitlyn was only home with us for two weeks, when she was readmitted back into the NICU, for feeding problems, combined with rapid weight loss. She stayed there for another week. They did tests on her, and worked with her on a feeding plan. They put her on soy milk formula and she started to gain weight again. She was then released after she got up to a certain weight.
As you can imagine, watching her go back into the NICU again for another week, was simply heart wrenching. After being put on a feeding plan and different formula, she started to do well with her weight gain and eating at home.
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 four 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. She may need rechecked during her teen years, however.
It has been known to come back during those years, but we are trusting a God that it won't be the case for our girl.
In May of 2010, at 10 months old, we found out she had scoliosis.
We were told by our family chiropractor, at a normal visit for David and I. She had a small lower bulge in her back, that I asked him to look over.
I had no idea what this bulge was or meant for Kaitlyn. He held her up and check her spine from top to bottom. He told us her spine was in a "S" shape and that it was more than likely Scoliosis. I can't begin to tell you how upset and sacred my husband and I were at that moment in time.
It came to us a an incredible shock and horror. As far as we both know, none of our family members have scoliosis, at least not in the immediate members. So, we just did not understand why. I came home and researched for hours on the computer, as to just what Scoliosis was about.
What I found did not help to calm my fears or worries, only heighten them.
We took her to her pediatrician and he refereed her to a local Orthopedic Dr., we were able to be seen right away.
She was given xrays, and we were told the results.. Infantile Scoliosis... with a curve degree of 35. Again, more shock and worry, so many questions
and not enough answers. He told us that because her curve was over 20 degs. that she more than likely had progressive scoliosis (meaning it would continue to curve with growth). We were then sent for a MRI of her entire brain and spine, to see if there was an under lying condition that was causing her Scoliosis.
While we were waiting for her MRI results, I was feverishly looking for any possible procedures other than spinal surgery.. that could help her helpless little spine. I would not accept spinal surgery, as our first and only option. I found www.infantilescoliosis.org and it really was a miracle that I found this site. I found out that surgery didn't have to be my babies only option for scoliosis treatment, thank the Lord!
We found out that she could possibly wear Mehta E.D.F serial plaster casts, and possibly see correction of her scoliosis. It was of God, I truly and whole heartily believe, that I found this site. I got in touch with some wonderful people, who were willing to help me get started. They referred us to the head nurse at The Shriner's Hospital for Children in Chicago, one of the few hospitals equipped to place these very special scoliosis casts on young children.
I was over the moon excited that we had a plan for Kaitlyn and it didn't involve spinal surgery!
We were set up with out first consultation visit with the head Orthopedic Dr. at Shriner's, and in June of 2010 we went to Chicago for our consultation.
He reconfirmed that she did have Infantile Scoliosis and that her curve was around 35 degs., at the time we hadn't gotten the call regarding her MRI results. The Orthopedic Dr. called in for them, on the very same day of our consultation visit. He read off the report to us, and we were again given some very unsettling news. Not only did she have Scoliosis, but she had a Chiari Malformation. I can't put into words what I felt like, after getting more devastating news. I don't think there will ever be words. He told us that she was a candidate for the Mehta casts, but first we would need to see a pediatric neurosurgeon first. To make sure that the Chiari wasn't first going to need decompression surgery and to simply see how bad it really was.
So we did just that, we found the best local pediatric neurosurgeon that we could find. We went to The Children's Hospital of Michigan and were seen by the Chief of Staff, we felt as though we were in good hands with him. He went over her MRI results and determined that her Chiari did not need surgery at the time and she would be monitored every 3 to 6 months for the Chiari. To this day, I still cannot believe that we ever see a neurosurgeon for our child.
When we got the green light from the neurosurgeon we took her back to Shriner's in September of 2010, for her very first Mehta cast.
She was only 14 months old at the time, it all seemed to surreal. We were scared and unsure of the new changes that were forcing their way into our family. I wasn't sure how she would do wearing a 3 pound cast and if she would ever learn to walk in one. Again, how to put into words your feelings?
She did SO well in her first cast, she shocked us all.. and she learned to crawl again in it and eventually learned to walk in it.
In her first cast she was corrected down to around 10 degs. inside the cast, it was amazing news and felt so wonderful.
After the first cast was removed, in November of 2010.. she had gotten really sick with bronchitis and multiple colds. Her immune system was very weak and it seemed impossible to get her over illnesses. It was such a discouragement to us, because they could not recast her while she was so ill.
It was such a horrible hurdle in her way, we feared daily that her curve would keep progressing while she was out of her casts. To this day, I don't understand why the Lord wouldn't just heal her illnesses so she could recast again.. but His ways are not my own. We simply had to just trust!
In May of 2011, one year exactly since her first MRI in May 2010.. the neurosurgeon ordered another MRI to check the status of her Chiari.
The MRI revealed a worsened Chiari and the Dr. brought us in to talk about decompression surgery. The day I was told that my 23 month old baby, would have to have a decompression surgery (basically brain surgery) was the darkest day in my entire life. I have never struggled more in my life, than I did in that time. We went home and wept and prayed fervently to the Lord, for wisdom and strength. On May 12th 2011, our baby girl at just 23 months old.. under went what is called a Chiari decompression surgery. The surgery had went very well, she had very little blood loss and the Dr. was pleased.
She was in the hospital for 4 days and nights afterwards to start her road to recovery. The Dr. and nurses all said that she would be in a lot of pain and probably wouldn't be able to lift her little head for at least two days. I was fully expecting that myself and tried to prepare myself for that.
But, she again shocked her parents, Dr, and all the nurses! She was not only lifting her head by day two, but standing in her little hospital crib and actually trying to jump up and down. She was a normal active 23 month old and was not going to let brain surgery stand in her way.
I have to admit she made me a nervous wreck during her recovery time in the hospital and even at home. What a strong and amazing child we had/have! We had SO many people praying for our girl during that time, a lot of people we didn't even know! What an amazing God we serve, what a testimony to the power of prayer! It took her around 8 weeks to fully recover from her surgery, it was a long road. Very tough at times for her and for us as parents. But, we did it and we got through it as a family.. with God's grace and love.
In the time that she was recovering from the decompression surgery, she wore a brace to try and hold her curve.
When we went for the 2nd cast in the fall of 2011, we were told that she had some correction from the brace! WOW.. we didn't expect that.
Another year of casting had went by.. we didn't see a huge correction in her curve with most of her casts. BUT, it was and is at least holding her curve from progressing even further. For that reason, casting is very much worth it all to us!
In May of 2012 she again went in for another MRI to check up on her Chiari. The MRI again revealed earth shattering news to our family..
I really have a compassionate HATE for MRI's.. can ya tell why?
The MRI revealed that she had a tethered spinal cord (please see the Tethered Cord tab for further information) and we were told that this was something that required surgery. We again wept and were upset and.. really didn't know how to feel or what to think.
We just did the only thing we knew to do, pray and seek wisdom from the Lord. What else can you do?
We researched the surgery procedure and were told all the possible outcomes for Kaitlyn, if she didn't have the surgery to correct her tethered spinal cord. We did not like the possible outcomes at all, and made an informed decision to proceed with the surgery.
I couldn't believe my little girl was going to have her 2nd major surgery, only a year after the last one.
On June 29th 2012, just two days after her 3rd birthday, she went in for her de-tethering surgery.
I had just had her baby sister on June 7th, and was barley settled in with her.. before we were all in the hospital again for another major surgery for our Kaitlyn. That summer was so hard on our family, but so much harder for Kaitlyn.
The surgery was shorter than expected, and went well.. again.. very little blood loss. She was in the hospital for just under 5 days..
she was in a great deal of pain during her hospital stay, but again defied the odds and expectations of the Dr and nurses.
To say she's amazing, is a serious under statement. I don't think there's any word to adequately describe our Kaitlyn! :)
It took several weeks of recovery at home, before we were back in Chicago for another Mehta cast.
Presently she is wearing her scoliosis brace, after 12 casts.
Her curve is staying around 25- 30 degs inside her brace.
She wears her brace 23 hrs a day and is given 1 hr brake for bath time.
She is very accepting of her brace and gives us no problems wearing it.
She goes into Shriners every 3 months for brace check ups with her Orthopedic Dr.
I don't know why daughter was born with health problems, I may never know.
I have questioned it over and over again.. until my head hurts and my heart aches. I took the best possible care of myself while I carried her, I had a normal pregnancy..I did not smoke, drink or do drugs.. I didn't even take but.. two or three Tylenol's for headaches. It's so hard to understand and accept..but like I always say.. God's ways are NOT our own. Kaitlyn is God's, she is on loan to her parents.. He knew her before she was ever born..
He knew what her life would be like and He has a plan for her life!! That is what gets me through this all.. just knowing that God loves her so much more than I or her father could ever love her. That is so amazing to me!
Kaitlyn is a beautiful girl inside and out, she is silly and loves to laugh and loves to make people laugh.
She is as smart as a whip and is one of the most loving person's I know.. she is compassionate to others and so very caring of other people's needs and feelings. She is unbelievably strong and courageous and she teaches her Mommy every day.. imagine that...my little girl teaches ME! :)
These problems have made her stronger not weaker and she amazes me daily.
She goes to preschool and LOVES school.. she has many friends and is so smart. She tell you all her letters and most of their sounds and knows how to count to 20. She has over come great obstacles and continues to do so!
Thank you for taking the time to read my babies story. ( At least the most condensed possible version of her story ;)
Please continue to think of her in your prayers! They are what get us through!
Rachel Dobbs
(Kaitlyn's Mommy)
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 minuets of 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. Kaitlyn was only home with us for two weeks, when she was readmitted back into the NICU, for feeding problems, combined with rapid weight loss. She stayed there for another week. They did tests on her, and worked with her on a feeding plan. They put her on soy milk formula and she started to gain weight again. She was then released after she got up to a certain weight.
As you can imagine, watching her go back into the NICU again for another week, was simply heart wrenching. After being put on a feeding plan and different formula, she started to do well with her weight gain and eating at home.
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 four 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. She may need rechecked during her teen years, however.
It has been known to come back during those years, but we are trusting a God that it won't be the case for our girl.
In May of 2010, at 10 months old, we found out she had scoliosis.
We were told by our family chiropractor, at a normal visit for David and I. She had a small lower bulge in her back, that I asked him to look over.
I had no idea what this bulge was or meant for Kaitlyn. He held her up and check her spine from top to bottom. He told us her spine was in a "S" shape and that it was more than likely Scoliosis. I can't begin to tell you how upset and sacred my husband and I were at that moment in time.
It came to us a an incredible shock and horror. As far as we both know, none of our family members have scoliosis, at least not in the immediate members. So, we just did not understand why. I came home and researched for hours on the computer, as to just what Scoliosis was about.
What I found did not help to calm my fears or worries, only heighten them.
We took her to her pediatrician and he refereed her to a local Orthopedic Dr., we were able to be seen right away.
She was given xrays, and we were told the results.. Infantile Scoliosis... with a curve degree of 35. Again, more shock and worry, so many questions
and not enough answers. He told us that because her curve was over 20 degs. that she more than likely had progressive scoliosis (meaning it would continue to curve with growth). We were then sent for a MRI of her entire brain and spine, to see if there was an under lying condition that was causing her Scoliosis.
While we were waiting for her MRI results, I was feverishly looking for any possible procedures other than spinal surgery.. that could help her helpless little spine. I would not accept spinal surgery, as our first and only option. I found www.infantilescoliosis.org and it really was a miracle that I found this site. I found out that surgery didn't have to be my babies only option for scoliosis treatment, thank the Lord!
We found out that she could possibly wear Mehta E.D.F serial plaster casts, and possibly see correction of her scoliosis. It was of God, I truly and whole heartily believe, that I found this site. I got in touch with some wonderful people, who were willing to help me get started. They referred us to the head nurse at The Shriner's Hospital for Children in Chicago, one of the few hospitals equipped to place these very special scoliosis casts on young children.
I was over the moon excited that we had a plan for Kaitlyn and it didn't involve spinal surgery!
We were set up with out first consultation visit with the head Orthopedic Dr. at Shriner's, and in June of 2010 we went to Chicago for our consultation.
He reconfirmed that she did have Infantile Scoliosis and that her curve was around 35 degs., at the time we hadn't gotten the call regarding her MRI results. The Orthopedic Dr. called in for them, on the very same day of our consultation visit. He read off the report to us, and we were again given some very unsettling news. Not only did she have Scoliosis, but she had a Chiari Malformation. I can't put into words what I felt like, after getting more devastating news. I don't think there will ever be words. He told us that she was a candidate for the Mehta casts, but first we would need to see a pediatric neurosurgeon first. To make sure that the Chiari wasn't first going to need decompression surgery and to simply see how bad it really was.
So we did just that, we found the best local pediatric neurosurgeon that we could find. We went to The Children's Hospital of Michigan and were seen by the Chief of Staff, we felt as though we were in good hands with him. He went over her MRI results and determined that her Chiari did not need surgery at the time and she would be monitored every 3 to 6 months for the Chiari. To this day, I still cannot believe that we ever see a neurosurgeon for our child.
When we got the green light from the neurosurgeon we took her back to Shriner's in September of 2010, for her very first Mehta cast.
She was only 14 months old at the time, it all seemed to surreal. We were scared and unsure of the new changes that were forcing their way into our family. I wasn't sure how she would do wearing a 3 pound cast and if she would ever learn to walk in one. Again, how to put into words your feelings?
She did SO well in her first cast, she shocked us all.. and she learned to crawl again in it and eventually learned to walk in it.
In her first cast she was corrected down to around 10 degs. inside the cast, it was amazing news and felt so wonderful.
After the first cast was removed, in November of 2010.. she had gotten really sick with bronchitis and multiple colds. Her immune system was very weak and it seemed impossible to get her over illnesses. It was such a discouragement to us, because they could not recast her while she was so ill.
It was such a horrible hurdle in her way, we feared daily that her curve would keep progressing while she was out of her casts. To this day, I don't understand why the Lord wouldn't just heal her illnesses so she could recast again.. but His ways are not my own. We simply had to just trust!
In May of 2011, one year exactly since her first MRI in May 2010.. the neurosurgeon ordered another MRI to check the status of her Chiari.
The MRI revealed a worsened Chiari and the Dr. brought us in to talk about decompression surgery. The day I was told that my 23 month old baby, would have to have a decompression surgery (basically brain surgery) was the darkest day in my entire life. I have never struggled more in my life, than I did in that time. We went home and wept and prayed fervently to the Lord, for wisdom and strength. On May 12th 2011, our baby girl at just 23 months old.. under went what is called a Chiari decompression surgery. The surgery had went very well, she had very little blood loss and the Dr. was pleased.
She was in the hospital for 4 days and nights afterwards to start her road to recovery. The Dr. and nurses all said that she would be in a lot of pain and probably wouldn't be able to lift her little head for at least two days. I was fully expecting that myself and tried to prepare myself for that.
But, she again shocked her parents, Dr, and all the nurses! She was not only lifting her head by day two, but standing in her little hospital crib and actually trying to jump up and down. She was a normal active 23 month old and was not going to let brain surgery stand in her way.
I have to admit she made me a nervous wreck during her recovery time in the hospital and even at home. What a strong and amazing child we had/have! We had SO many people praying for our girl during that time, a lot of people we didn't even know! What an amazing God we serve, what a testimony to the power of prayer! It took her around 8 weeks to fully recover from her surgery, it was a long road. Very tough at times for her and for us as parents. But, we did it and we got through it as a family.. with God's grace and love.
In the time that she was recovering from the decompression surgery, she wore a brace to try and hold her curve.
When we went for the 2nd cast in the fall of 2011, we were told that she had some correction from the brace! WOW.. we didn't expect that.
Another year of casting had went by.. we didn't see a huge correction in her curve with most of her casts. BUT, it was and is at least holding her curve from progressing even further. For that reason, casting is very much worth it all to us!
In May of 2012 she again went in for another MRI to check up on her Chiari. The MRI again revealed earth shattering news to our family..
I really have a compassionate HATE for MRI's.. can ya tell why?
The MRI revealed that she had a tethered spinal cord (please see the Tethered Cord tab for further information) and we were told that this was something that required surgery. We again wept and were upset and.. really didn't know how to feel or what to think.
We just did the only thing we knew to do, pray and seek wisdom from the Lord. What else can you do?
We researched the surgery procedure and were told all the possible outcomes for Kaitlyn, if she didn't have the surgery to correct her tethered spinal cord. We did not like the possible outcomes at all, and made an informed decision to proceed with the surgery.
I couldn't believe my little girl was going to have her 2nd major surgery, only a year after the last one.
On June 29th 2012, just two days after her 3rd birthday, she went in for her de-tethering surgery.
I had just had her baby sister on June 7th, and was barley settled in with her.. before we were all in the hospital again for another major surgery for our Kaitlyn. That summer was so hard on our family, but so much harder for Kaitlyn.
The surgery was shorter than expected, and went well.. again.. very little blood loss. She was in the hospital for just under 5 days..
she was in a great deal of pain during her hospital stay, but again defied the odds and expectations of the Dr and nurses.
To say she's amazing, is a serious under statement. I don't think there's any word to adequately describe our Kaitlyn! :)
It took several weeks of recovery at home, before we were back in Chicago for another Mehta cast.
Presently she is wearing her scoliosis brace, after 12 casts.
Her curve is staying around 25- 30 degs inside her brace.
She wears her brace 23 hrs a day and is given 1 hr brake for bath time.
She is very accepting of her brace and gives us no problems wearing it.
She goes into Shriners every 3 months for brace check ups with her Orthopedic Dr.
I don't know why daughter was born with health problems, I may never know.
I have questioned it over and over again.. until my head hurts and my heart aches. I took the best possible care of myself while I carried her, I had a normal pregnancy..I did not smoke, drink or do drugs.. I didn't even take but.. two or three Tylenol's for headaches. It's so hard to understand and accept..but like I always say.. God's ways are NOT our own. Kaitlyn is God's, she is on loan to her parents.. He knew her before she was ever born..
He knew what her life would be like and He has a plan for her life!! That is what gets me through this all.. just knowing that God loves her so much more than I or her father could ever love her. That is so amazing to me!
Kaitlyn is a beautiful girl inside and out, she is silly and loves to laugh and loves to make people laugh.
She is as smart as a whip and is one of the most loving person's I know.. she is compassionate to others and so very caring of other people's needs and feelings. She is unbelievably strong and courageous and she teaches her Mommy every day.. imagine that...my little girl teaches ME! :)
These problems have made her stronger not weaker and she amazes me daily.
She goes to preschool and LOVES school.. she has many friends and is so smart. She tell you all her letters and most of their sounds and knows how to count to 20. She has over come great obstacles and continues to do so!
Thank you for taking the time to read my babies story. ( At least the most condensed possible version of her story ;)
Please continue to think of her in your prayers! They are what get us through!
Rachel Dobbs
(Kaitlyn's Mommy)