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Thread: My unborn girl has congenital scoliosis, any information will be deeply appreciated.

  1. #1
    Join Date
    Jul 2006
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    2

    Unhappy My unborn girl has congenital scoliosis, any information will be deeply appreciated.

    Dear all, just 5 weeks ago when my wife and I went to have our baby's ultral sound check up. The doctor told us the bad news, she has congenital scoilosis or hemivertibrae in the lower back. One side of the 10th vertibrae did not form, the orthodist told us that she has a 5 - 10 % curvertual. The spinal cord is very narrow at the part of the deformed bone, the doctor told us that she might be disabled from that part down(worse case). But at least she will be fine from now on to the birth, and it will be "wait and see" situation. I was wondering if anyone has this experience and what is the outcome, I know its is hard as it is for us. But it is a very difficult decision, if we feel that it is good for her to be disabled. Or have to deal with this issue for the rest of her life, and how can I look at her face and tell her that it will be better and it gets worse?

    Sorry, my English is not that good. Thank you.

    My email is, davidtsuei@yahoo.com

    ***Does anyone has this type of result?

    FETAL MRI: 07/07/2006

    CLINICAL DATA: The estimated gestational age of the fetus is
    approximately 21 weeks. An abnormality at approximately the T10-11
    level was noted on a fetal ultrasound.

    TECHNIQUE: Using a torso phased array coil, T2 sagittal, coronal,
    and axial single shot fast spin echo images were obtained through
    the fetal spine.

    FINDINGS:

    Single live fetus is seen in the breech position. The placenta is
    oriented posteriorly.

    Within the spine:

    There is an abnormal angulation at the thoracolumbar junction. The
    spinal cord and canal are normal in appearance above this focal
    area and normal in appearance below this focal area but the spinal
    fluid and cord are not well visualized within the focal abnormality
    at the thoracolumbar junction. This most likely represents a
    segmental spinal dysgenesis.

    IMPRESSION:

    Findings consistent with segmental spinal dysgenesis involving the
    lower thoracic spine.

    END OF IMPRESSION:

    Transcribed By: : 20060707 : 1832
    Approved By:
    Last edited by tsda; 07-18-2006 at 01:43 PM. Reason: implementation

  2. #2
    Join Date
    Jan 2006
    Posts
    78
    Hi, I'm sorry I don't have any experience with congenital scoliosis but I know there is a mom on here named Carmell who has a lot of knowledge on this subject and would be of great help to you. I also read some other messages on this site and someone mentioned "spine kids" website. I just entered it into a search engine and got the web address that way. I checked it out last night and there is a place for parents to address their concerns about congenital as well as idiopathic scoliosis and I seen that she answers a lot of parents questions on that site as well. So you may want to check that out.

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome,

    My son, Braydon, is now 11yrs old. We were told during a routine ultrasound that he was going to have several structural birth defects, including congenital malformations of the spine (causing scoliosis). His congenital scoliosis is his biggest medical hurdle. However, he is an active 11yr old boy who loves to ride his bike, dig in the dirt, and do everything other kids his age love to do.

    It sounds like your little one will need to have medical attention for her lower spine. Did they say if they think she has spina bifida? If there isn't an open spina bifida issue present, she could have a close spinal cord defect (Braydon has a mild case of closed spinal cord defect) which could effect the lower limbs and her bowel and bladder. They probably won't be able to confirm the degree of defect until birth.

    Where are you located? Hopefully you will have a good team of pediatric docs (neurosurgeon, orthopedic surgeon, urologist, etc.) to give her the best care possible. I'd be happy to share more of our story with you. You probably won't know much until she's born. Enjoy her! She will give you the strength you need to give her the best care possible. The light she has will make all the effort worth while. I promise.

    My best,
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  4. #4
    Join Date
    Jul 2006
    Posts
    2

    Dear All,

    Thank you guys very much for the support, the doctors told us that there is only one section that seems to be more narrow than normal. Like Carmell stated that we could only know how severe when she is borned, oh, I still haven't given her a name yet. But my biggest worries are her condition, we have decided to keep her. Because we believe that all babies are precious and are a Godsend, because my wife is 23 wks and we needed to know all options before we make a final decision. But when we heard the doctor told us that they will have to kill, "KILL", it has never appeared to us that we are really killing her. I rather take the chance that she will be as normal as she can be, who knows what will happen and that's the beauty of it all. Her legs are kicking and are in normal position, and all other organs are functioning normal. The orthopedic told us that she sees her as very mild case, the only problem we have is the narrow spinal cord. We are located in San Francisco, and the hospital is UCSF. I was told that they have some of the best doctors in the world, and I truly hope this is true. I will keep posting any new informations hereafter, and hopefully I will have good news for you all to share. Thank you again, and God bless!

  5. #5
    Join Date
    Oct 2003
    Location
    Vancouver, Canada
    Posts
    20
    Hello,
    I'm sorry I'm posting so late, as you've already made your decision to keep your baby, but I have two children with extensive spinal abnormalities and we are all very happy and healthy. It has taken a little extra work here and there, but life is good for all of us. I am so grateful for my children.

    I hope things are progressing at your side and that your wife feels well.
    Surattius
    Mum to two boys with scoliosis

  6. #6
    Join Date
    Oct 2006
    Posts
    1

    You're not alone

    My baby boy, Paul Joseph, was diagnosed with congenital scoliosis when he was 23 weeks gestation. The doctors initially told us some very scary stuff: that he could be paralyzed among other things. In fact, at Paul's birth, the head of the NICU at Good Samaritan Hospital was in the delivery room waiting to treat him for trachea problems and other issues. But Paul didn't spend one minute in the NICU--he came out kicking and screaming like any other beautiful baby.

    He is the most beautiful, fat, and happy baby, and we are so grateful for him. But he does have three hemivertebrae and a curve of 45 degrees, and he's only four months old. He will have to undergo a few surgeries. We're in the process of deciding where to treat him. We have an appointment with Dr. Diab of UCSF tomorrow. We have already seen Dr. Kanel at Good Samaritan, and in a few weeks, we will see Dr. Rinsky at Stanford. We may also go to Oakland Children's Hospital as well.

    I'm so glad that you decided to keep your little girl. She is the best gift God will give you and your family. I would love to communicate with you further on this. God bless.

    Carmell and stees, thanks for your posts. They are very encouraging.

  7. #7
    Join Date
    Jan 2006
    Posts
    513
    Pj's mom,
    Your post made me cry with happiness. It was so sweet.
    God Bless
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  8. #8
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Ana,

    I'm glad to hear baby Paul Joseph is a healthy little one. That will help so much in the treatment options for his congenital scoliosis issues. Another recommendation for possible treatment in your area is Dr. Gupta at Shriners in Sacramento. I met him once. Very kind man. He is a VEPTR trained surgeon and even sent his nursing staff to have VEPTR training so the patients would have the best post-op care possible. I was quite impressed with that.

    Have you visited the Congenital Scoliosis Support yahoo group? You can find out more about it here... http://health.groups.yahoo.com/group...liosisSupport/

    I'll wait for you to send me your email address, then I'll write more about Braydon's experiences. You are doing great. Gathering information to make the most informed decision (based on all the recommendations) is priority.

    Take care,
    Last edited by Carmell; 10-25-2006 at 03:33 PM.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  9. #9
    Join Date
    Sep 2006
    Posts
    63

    Hang in there...and UCSF is excellent...

    Dear tsda,

    Just wanted to write and offer support.

    My daughter was born with congenital kyphosis (which is similar to scoilosis, just in a different plane). It was not diagnosed when I was pregnant - we noticed a lump on her back after we brought her home. I remember taking her to the pediatrician to find out what the lump was and I was told me that she had kyphosis. They gave me the worst possible scenarios (paralysis, spinal bifida, etc. ) without offering any clear explanations of the condition, treatment, and outcomes. Everything was rather overwhelming at the time so I can appreciate what you are going through.

    The thing that helped the most was having access to information about my daughter's condition and understanding what could be done for her. And it sounds like you are already trying to gather as much information as you can for her. As I learned over time, each child with scoliosis is quite unique and there's quite a lot that be done for children with scoliosis. My daughter is now 12 and I simply had to 'wait and watch' her kyphosis for 12 years. It was helpful to have a pediatric spine specialist monitor her regularly.

    For 12 years, she has been very healthy and athletic (she's a first degree black belt in Tae Kwon Do and a talented musician). Her kyphosis never stopped her from doing anything although I never encouraged her to pursue gymastics, knowing that it might be hard if she had to drop out of it eventually. I was also told that she may need a corrective surgery as she gets closer to puberty. And sure enough, her new surgeon (Dr. Boachie) recently recommended that we have a corrective surgery in the next three months. The post-surgery world is still unknown to me but this forum is a great place to get information on all aspects of scoliosis (Unfortunately, for me I didn't know about its existence till about a few months ago).

    Finally, UCSF is a great place to be with your child. I used to take my daughter there until last year (even though I live in NY state) to see Dr. David Bradford. Dr. Bradford is now retired but I hear that Dr. Diab (who has taken on his pediatric patients) is excellent.

    Enjoy the arrival of your daughter and good luck with every thing.

    Best,

    Sam

  10. #10
    Join Date
    Aug 2005
    Location
    S. Jersey
    Posts
    16

    Good luck to Sam's daughter!

    Quote Originally Posted by sam_newyork
    I was also told that she may need a corrective surgery as she gets closer to puberty. And sure enough, her new surgeon (Dr. Boachie) recently recommended that we have a corrective surgery in the next three months.
    Sam, good luck to your daughter for her upcoming surgery. Dr. Boachie is pretty amazing, I've seen some of his work on the Discovery Channel programs for Surgery Saved my Life and another case where he corrected a girl with a 90 degree bend near her waist who couldn't walk upright... Seems like SUCH a nice man too...
    Last edited by conni60640; 01-20-2007 at 11:58 PM. Reason: change title
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

  11. #11
    Join Date
    Sep 2006
    Posts
    63

    thanks, Connie

    Thanks for the good wishes, Connie.

    I just saw the episode on Discovery as well and was just amazed by Dr. Boachie's work. I thought about not watching the show but decided that I could turn off the TV if it became too difficult. However, I just found it reassuring that he was able to help so many difficult cases. In fact, my daughter watched sections of the show as well. She was impressed by the kids on the show - they were amazingly brave and very good role models for any kid dealing with scoliosis/kyphosis.

    Sam

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