View Full Version : Kyla's Story

05-19-2008, 05:50 PM
My daughter just turned 4 months old today. At birth she was diagnosed with infant scoliosis. This is what her report says. There is right convexity scoliosis of the thoracolumbar spine without evidence of segmentation anomalies. The scoliosis measures apprx 37 degrees. No evidence of an acute fracture, dislocation or other bony abnormalities are identified. No large para vertebral masses are seen. Incidentally noted is the lateral subluxation of the right femoral head and abnormal anterolateral to the scapula.

When I was pregnant with Kyla, they found a cystic hygroma on the back of her neck at 13 weeks. I was referred to a specialist in Wichita, Ks to undergo an amniocentesis. All the doctors were convinced that Kyla would either have turners syndrome or something like downs. After the Amnio, and all the results came back normal baby girl. We were thrilled. However, I noticed that after the amnio, she kind of just curled up in a little ball and stopped moving. I could feel her feet kick me in the ribs as she grew but never did I feel her actually roll around. Her head stayed down and legs and feet were always in the same exact spot. I had never been pregnant before so I had no idea that anything was wrong. I figured since I was at a high risk clinic they would have told me if anything was wrong, I was there at least twice a month, and more frequently towards the end. I did notice that she had no fluid around her face. Her face was smashed up against my cervix for months!

After she was born, a bomb was dropped on me. I had expected my healthy normal baby girl to be born, and out of the hospital within a few days. Oh how wrong I was. She came out with not only scoliosis, but flexed wrists, knee flexion contractures, which means she cannot extend her legs at the knee, and severe club foot deformity. They actually call it congenital vertical talus. Her hips are also suspected to be dislocated.

While we were in Wichita they did yet another higher resolution Karyotype test, and those results all came back normal again. Now we are being referred to a geneticist. I honestly just feel like she is completely normal, she just has physical problems due to the lack of fluid. She stopped moving after that amnio, and if someone was stuck GROWING in one position for 5 months, that is exactly what would happen.

This wednesday we are headed to Childrens Mercy hospital to meet her new Orthopedic surgeon Dr. Schwend. I was just wondering if anyone has heard of him or knows of his workd. My daughter is my whole entire WORLD and I just want to be sure she is getting the best possible care. If anything ever happened to her, my whole world would end.

Thanks and God bless!

05-19-2008, 06:28 PM
First I have to congratulate you on your baby girl!

Second, I'm trying to understand what you are saying. Are you suggesting that the level of amniotic fluid was too low at all times after the amniocentesis perhaps due to it constantly leaking out through the needle hole?

Did anyone ever comment on low amniotic fluid levels on any of the several sonograms after the amniocentesis? Do you have the reports?

I have only had one (viable) pregnancy and it was twins so I have no idea how a singleton feels or moves. My girls were in separate amnions but had only one chorion. They were quite crowded and didn't move much for months. If I remember correctly, they were in the position for a few months that lasted until I went into labor (one vertex, one transverse). They both have scoliosis (ETA: they have the adolescent idiopathic type, not the congenital type) but I assume it is due to having the gene (or genes) for it.

Hopefully others who had singleton pregnancies can comment on your experience.

Good luck with your wonderful baby girl Kyla. :)

Whenever I hear about or see another baby, I always wish I had more babies. :(

05-19-2008, 07:03 PM
Congratulations on your new baby girl. What a wonderful gift. My grandmother always says, "a worrisome comfort". How true!

I agree with Sharon - the lack of amniotic fluid may have been part of the issue but I don't believe its the only cause of the scoliosis and rigidity. I'm glad you will be consulting with a geneticist, but I'm not sure that will change the treatment plan for her. You need to find a good pediatric orthopedic surgeon who understands kids with complex medical issues. I've heard very good things about Dr. Price and Children's Mercy. Hopefully between the team of docs there, you will get some answers to help give you peace of mind.

My Braydon does not have contractures, but was born with bilateral hip dysplasia and a right clubfoot, besides congenital scoliosis. I'm glad to hear Kyla doesn't have any bone malformations in the spine. That's good news, and will be good if/when treatment is necessary.

Having answers to your many questions will help you make the right medical decisions for her. Hopefully you will get answers soon so you can relax a little and enjoy her each and everyday. She is growing and learning new things. Try to enjoy each day because you won't be able to get them back. The medical stuff will happen, just try to enjoy life along the ride. That first year or so is very hard. Once you get an emotional handle on her life, you will feel much better, I promise.

My best to you.

05-19-2008, 08:07 PM
Congrats on your beautiful new baby girl!!

I just wanted to welcome you. I'm sure that things seem a bit overwhelming right now (we've all been there) - but I, too, have heard very good things about Children's Mercy Hospital and with the right team of doctors looking after your daughter she should be able to lead a full, normal life.

Good luck and please keep us posted.

05-19-2008, 11:35 PM
Congrats! You have come to the right place as there are a lot of knowledgable parents on here that can give you a lot of advice and support. I am 20 so much older than your daughter and I was not born with my scoliosis but I just wanted to comment because I saw Dr. Nigel Price at Children's Mercy from when I was diagnosed at 14 to a few years ago. I see an adult surgeon now, but Dr. Price is a very knowledgable, understanding doctor and he is great with kids. I don't know the other doctor you wrote of but from what I hear the whole group there is very good so I'm sure you'd be fine with any of them. I also have a friend that I met in college that happened to have surgery with Dr. Price and is doing very well. Just remember- ask a lot of questions and you are in the right place becoming informed about your daughter's condition!

05-22-2008, 09:15 AM
Yesterday we went to Children's Mercy and Met with Dr. Schwend. It was so relieving to meet with someone who has treated so many other babies like Kyla. After looking at her, he did say that she has a lot of dimpling at some of her joints, like her knees, wrists and elbows and that is a direct result of not having enough fluid in the womb. To answer Pooka1's question, She had lots of fluid UNTIL the amniocentesis was performed. After the amnio, she kind of just curled up in this little ball and did not move at all. That is why she has the contractures, she was stuck in one position for many months, and that is how all her joints grew. I have a feeling that I leaked fluid after that. I explained to the doctors at that clinic in the months afterwards, that I felt like I may have been leaking, but nothing was ever said to me. It was a high risk clinic so they should have been able to tell me something was wrong. Finally towards the end of my pregnancy I started getting very frustrated with them, because every time I would go to try and get a 4D picture of her, we could never see her, and the things we would see were scary because her face was so smashed. The tech then told me it was because she had almost no fluid around her face at all, and that she was smashed against my cervix. That's when I started putting two and two together. After I had my last appointment there, they just kind of got me out the door and had nothing else to do with me. None of my records were transfered to the delivering doctor, so when Kyla came out nobody had any clue about her history.

After yesterday I feel so much better. Dr. Olney referred us to Dr. Schwend and after meeting him I feel like this huge weight has been lifted off of my shoulders. I slept better last night than I have in months. Yesterday was just so hard at first. To walk into that place and see so many little kids with so many severe problems, you can't help but feel a little bitter and angry that your child has to be there. I almost lost it, when we went back for x-rays and I heard a young girl screaming and crying "it hurts, its hurts" who had just came out of back surgery. But after meeting with the doctor, I have so much more hope. We will start surgery when she turns one year of age on the feet, then the legs. And in 6 weeks we meet with the hand surgeon, but since she has been wearing her splints her hands look so much better. In fact, yesterday they doctors were very surprised that her hands looked so good! In three weeks we go back to get her back brace. They showed me a before and after photo of another little girls spine that was just like Kylas and it was almost completely straight after only 6 weeks of wearing that brace, so i'm very hopeful! Im wondering how uncomfortable this is going to be for her though. It is sort of like wearing a shield all of the time.

We are still planning on seeing the geneticist in september, but I honestly and truly feel like this was all caused by the lack of fluid she had. He told me that he's treated many babies with genetic problems, and many babies who have contractures as a result of low fluid, and Kyla seems to resemble those babies the most. So i'm hopeful

05-22-2008, 09:24 AM
Wow, what a moving post - thanks for sharing!

Dr. Schwend sounds AMAZING - I'm so glad you are feeling better about things.

As parents, all we can do is seek out the very best care for our children and then be there for them. The rest is out of our hands so best to just enjoy each day with them (now if I could only remember that all the time - LOL!)

Please keep us posted. I'm sure everything will turn out OK - you seem to have found an incredible doctor.

05-22-2008, 12:22 PM
Well it seems like your instincts were correct... low fluid. And the best news is that they can help Kyla. What a relief.

I never had an amnio but I'm guessing they list constant leakage afterwards as a complication, hopefully rare. Are you going to try to get your prenatal records, sonograms, reports, etc.? Does it matter at this point?

I agree with Maria that it must be such a relief to find an excellent doctor.

Good luck to you and your baby girl!

Best regards,

06-09-2008, 04:44 PM
We go tomorrow to KC to pick up Kylas new Brace. Can anyone share some information or personal thoughts about this brace? It looked kind of big and bulky, plastic and hard, I can't imagine this is going to be easy for any of us, especially Ky. I'm really worried about it!

06-09-2008, 07:13 PM
Good luck with the brace fitting. Did they cast her to make the brace? Or is this an "off the shelf" brace? I hope they cast her because it will be a much better fit.

You will find that its easy to dwell on the sad things - like the fact you can't give her a hug. Hugging a piece of PVC pipe isn't fun, but, this is important. You have to find anything positive and focus on the positive. Look at her bright smile and beaming eyes. Remember you are doing everything in your power to HELP her. This is not torture (although to parents it feels like it). This is for her benefit. Celebrate that there IS treatment for her. She will adjust to it much better and sooner than you will. The brace can become like a friend to her. Some kids even get so attached that the brace is like a security blanket. My Braydon learned to walk independently at 16 months while wearing his brace. He got to the point where he needed to have it on so he would feel secure.

Good luck and let us know what they say, and how things go.

06-23-2008, 04:21 PM
We have had her brace now for about 2 weeks. Kyla absolutely hates it. She literally cries the entire time she has to wear it! I hope it gets better because she acts like it's so tight she can't hardly breathe. We went in, she was fitted and then this brace was custom made for her, to answer your question Carmell! It's teeny tiny, pink, and has lots of fuzzy stuff on the inside so perhaps she won't mind it as much when it's not 90 degrees! I can only get her to wear it like 30 minutes at a time right now! It has been so stressful!!!

06-23-2008, 04:25 PM
I was going to ask...I have a friend who is a massage therapist and she told me that since she is so young, if I get her started NOW in a massage program that the muscles around the spine will actually start to pull it back into place....has anyone heard of anything like this?