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Thread: New Here...

  1. #1
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    New Here...

    I just found this forum. My daughter was diagnosed with cystic kidneys and a heart issue in utero. We didn't know about the scoliosis until after she was born. My daughter had heart surgery when she was 8 days old to fix tetrology of fallot/pulmunary artresia/close the VSD. She's now like 8 weeks past the surgery and is doing well. We just had a scan of her kidneys for functionality last week, her right one has no functionality and I'm not sure of the percentage of the left.

    Today was the appointment with the orthopedic dr. We had been told by other drs that there were only 2-3 vertebrae that were misformed. But they were reading an X-ray that was taken for the heart. We took X-rays today and the following are issues: Thorasic 7-13 and Lumbar 1-2. I'm being sent to another Dr to discuss issues as this dr had never seen such a complex spine. I know she has 13 ribs and she also has something going on with her left hand (thumb and wrist).

    I'm kind of in shock, because I'm now having to think my poor angel is going to have another surgery and so soon. I'm hoping they'll get me in sometime here soon so I'll know exactly what she'll need and when.

    If you got this far.. thanks for listening

  2. #2
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    Oct 2005
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    Grand Rapids, MI
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    Kerina,

    So glad to hear that your daughter is recovering well from her surgery for tetralogy of fallot. My son was born 26 years ago with tetralogy of fallot and at that time they did not fix it all in one step--they put in a temporary shunt which held him until age 6 when they did the open heart repair. It was a brand new procedure and even the medications they used on him were experimental and we had to sign permission forms for them to be used!!

    So they have come a long way in treating these little ones born with the congenital problems. You have already gone through a big hurdle with her in getting her heart fixed. Now the doctors will work on the other challenges and you will face each one one day at a time.

    Each of my three children has had medical challenges. Some, like the heart problem, we knew about at birth. Some did not present themselves until later on in their childhood or early adulthood. I am glad that we cannot see in advance all of the roads that we will walk. But each child is a special gift to you from God and you are given the privilege of loving them and walking with them through whatever medical treatments are available and necessary for them.

    My advice is not to look too far ahead in what may or may not be in her future. Just love and enjoy her each day. Take her to the best specialists and use them to help make the best decisions in her treatments. God will give you the strength you need during that day, for that moment and that is all that you and she will need.

    THere are many mothers on this site who have walked the path with infants with congenital difficulties and I will pray that they will come along side you for encouragement and strength.

    Deb

  3. #3
    Join Date
    Oct 2003
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    Utah
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    Welcome kerina313,

    I agree with Deb. Take a few deep breaths, and try to relax a little each day. Your little one is going to be fine. She sounds suspiciously like she has VACTERL Association - have they given her a label or diagnosis for her assortment of birth defects? My Braydon (now 11yrs old) is also a VACTERL patient. We found out about many of his birth defects before he was born. The first year or two is the hardest on us parents. You will do fine. Over time, you will get a better emotional handle on things, I promise.

    Braydon has multiple minor issues. His biggest hurdle has been his spine issues. My suggestion is to have a good PEDIATRIC orthopedic surgeon who has extensive experience treating kids with multiple medical issues. I can't stress how important this is. If your little one's spine malformations are on opposite sides of the spine, there is a good chance her spine will stay stable for a long time and she may never need surgical intervention. Seeing a ped. ortho every 3-4 months in the first 2 years of life is very important. You need to make sure to keep an eye on things.

    Also, after about age 6 months, she'll need a full spine MRI to make sure there are no problems with the spinal cord.

    After all the issues are under control separately, maybe consider seeing the specialists at a spina bifida clinic. They are all the same docs you would be seeing separately (neurosurgery for spinal cord issues, orthopedics, urology, etc.) and you can get the appointments done in one visit! We've had very good experiences with SB clinic, but after all the initial repair was done. Feel free to email me and I'll be happy to share our experiences. Braydon has had 19 surgeries to date (4 clubfoot repairs, 2 bladder/renal surgeries, tonsil/adnoidectomy/ear tubes, a tethered cord release surgery, spinal fusion surgery and 10 VEPTR surgeries/expansions (I'll explain more if you'd like)).

    My point is that you need to take care of each separate issue she has. Take it all one step at a time. Don't overload yourself. Remember to enjoy her every day. Remember to take care of yourself. I have a badly outdated webpage with some photos of Braydon so you can see how great he's doing. He'll be in the 6th grade this fall and lives life to the fullest. He just had his last day of golf lessons today - he did great! There are so many things that are good in life. I promise. Send me a note if you'd like - boulderfam@hotmail.com
    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
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    Jul 2006
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    Pennsylvania
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    Thanks for the replies. I just needed to get everything out last night after the appointment. I'm sure we'll be fine, just every so often I get a momentary OMG moment. The term you used sounds familiar. We meet with a Genetics person on August 28. Luckily we have been dealing with dr's associated with Children's Hospital in Washington DC.

    She is a very special girl with lots of personality - even at 2 months! I'm blessed to have her.

    Take a look at her: www.kerinakreation.com/emilyblake.htm

    Erin

  5. #5
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    Oct 2003
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    Utah
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    Hi Erin,

    Thanks for sharing your photos of baby Emily. She's adorable!

    I noticed that she leans to the left. She also has a tummy "pooch" to the right, just below her chest. Braydon looked very much like this as an infant, only a mirror image. He concave side is the right side.

    In 10+ years of talking to other families who have similar situations, I haven't heard anyone seeing an excellent pediatric orthopedist for congenital scoliosis at Children's Hospital in DC. Once she gets recovered from cardiac surgery and everything else has been taken care of, I would suggest finding a ped. ortho. who has dealt with kids like Emily. She needs to see someone with experience with kids who have multiple issues going on. I would strongly recommend Drs. Betz or D'Andrea at Shriners hospital in Philly. Boston also has a good ortho (Dr. Emans).

    She is beautiful and will continue to be the light of your life, as it should be. Take care and I look forward to hearing updates on how she's doing.

    Oh, there is a good email list for families dealing with congenital scoliosis. You can read about it and sign up here...http://health.groups.yahoo.com/group...liosisSupport/

    My best to you.
    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/

  6. #6
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    Jul 2006
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    Pennsylvania
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    Carmell - just a quick question - at what time did your son have his first surgery on his back..

    I have another appt this week with the other ortho dr, I'm hoping to find out more about her spine - whether its only on one side or on both.. I'd definitely like to know more about the surgery and what to expect. If you have any suggestions as to what I should ask the dr - I'd appreciate it.

    As far as going to Philly - right now, my insurance wouldn't cover going there. However, depending on what they say - I might look into it.

  7. #7
    Join Date
    Aug 2004
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    ny
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    Hi Kerina,

    Welcome. I see that you have received some very good advice so far. Carmell and the others have so much good information to offer.

    Carmell recommended Drs. Betz and D'Andrea at Shriners Philadelphia and I couldn't agree more. I just want to point out that all care at Shriners is FREE. They will even assist with transportation if one cannot get there on their own. They don't care if you have insurance or what it covers because they do not bill for their services.

    By the way, a note to all: They just added another spine specialist at SHC Philadelphia - Dr. Amer Samdani. He is featured in the current issue of the hospital newsletter if anyone is interested in finding out more about him. His credentials seem quite good - and I believe he may be the doctor Kathleen (Hannah's mom) told me about. She and Hannah met him during their stay there for Hannah's stapling and they both really like him.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #8
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    Maria,

    Is Dr. Samdani a neurosurgeon? If so, that's great that they have him on the "team" in Philly.

    Kerina - PLEASE call Shriners in Philly. You need to get another opinion so you can make an informed decision. These surgeries (whatever you choose) are huge surgeries. Braydon had his fusion surgery done when he was an infant. I DO NOT recommend fusion surgery, if there are other recommendations. Fusion is SUCH a final procedure - you can't UNDO a fusion. Fusion has made Braydon's body much shorter than it should be. His lung function is compromised because of the fusion. His spine was so malformed that doing nothing would have been worse for Braydon. There are so many variables - you have to know as much as you can to make sure the surgeon has the right recommendation for your child.

    Good luck and keep us posted.
    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
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    Carmell,

    Dr. Samdani's title at Shriners is listed as spine surgeon/orthopedic surgeon but his background IS in neurosurgery. He was the chief resident in the Dept. of Neurosurgery at Johns Hopkins. He also did a fellowship in Pediatric Neurosurgery at CHOP (Children's Hospital fo Philadelphia), etc. Some nice credentials indeed.

    How did you know? Had you heard of him before?

    I, too, am very happy that they added him to the team in Philadelphia to work along side Drs. Betz and D'Andrea. The children can only benefit from this addition. From what I have read and heard from Kathleen (I checked her e-mail and it was Dr. Samdani she had referred to), he also has a very gentle, compassionate bedside manner. I had e-mailed him to welcome him aboard and he actually wrote back to thank me the next day! I think we have a winner here

    Kerina,

    Please take Carmell's advice and seek an opinion from Shriners in Philly. As I mentioned earlier, you need not be concerned about insurance issues. I promise you will never see a bill from Shriners. If I can be of any further assistance, please let me know. Their phone number is on their website - or I'd be happy to provide it to you.

    Good luck,
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #10
    Join Date
    Jul 2006
    Location
    Pennsylvania
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    Thanks to both for the information. I looked up Shriners online. The only reason at the moment I'm staying with Children's is basically because it's closer and I want to hear what this dr says. I am going to ask her about whether or not she could transfer me up to Philly. Luckily I have a friend in Philly I could stay with if I needed to, but, it's only a 3 hr drive too.

    Between you all here and the research I've done, I definetly want to wait on any fusion for her. Although, her back may be bad enough they may have to do it. I'm hoping for an alternative solution.

    I've had really good luck with Childrens with her kidney and heart issue, so I'm hoping this dr I've been referred to, is just as good. If not, it's good to know I have a back up

    I'll let you know how the appointment goes on Wednesday.

  11. #11
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    ny
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    Hi Kerina,

    I know it's tough to switch from a doctor or doctors that you are comfortable with and trust - and I'm sure the doctors at Childrens are great for issues associated with the kidneys, the heart, etc. as you stated.

    I think the point Carmell was trying to make is exactly what one of the doctors told me to reassure me prior to my son's surgery at Shriners in Philly. He said that in the two or three decades he had practiced medicine, he had not found anywhere superior to Shriners Philadelphia when it came to PEDIATRIC ORTHOPEDIC SURGERIES - including the complex cases.

    Of course, the decision is ultimately yours to make. Please just know that our hearts (mine and Carmell's) are in the right places in trying to recommend the very best doctors for such a specialized field.

    As I mentioned, Shriners will help with transportation if necessary. And if surgery is performed there, they will accommodate one parent to stay overnight with the child for as many nights as needed. They really try to treat the entire family and make things as stress-free as it can be at a time like that.

    Good luck on Wednesday and keep us posted.

    Hugs,
    Last edited by mariaf; 08-07-2006 at 03:39 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  12. #12
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    Oct 2003
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    Utah
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    Ditto what Maria said. Well done, Maria!

    I, too, understand completely how you feel about having great care (so far) at Childrens. I have obviously trusted Braydon's LIFE to the hands of our orthopedic surgeon. I trust him with my child's life. That doesn't mean he isn't human and may not have the right answers 100% of the time. I have gotten other opinions about the "game plan" for Braydon from other guru's in congenital scoliosis research (I wrote to them back when Braydon was an infant-Drs. Winter and Bradford - both reassured me that at the time, we had the right plan set for Braydon). I trust Braydon's doctor but that doesn't mean I have to agree with everything he says. For example, I'm taking Braydon to Baltimore (from Utah - quite a cross-country trip) in April 2007 for another opinion about his leg/foot issues. Balitmore has a fabulous reputation for treating children with complicated limb issues. I want to make sure that our local ortho has the right "plan" for the limb issues too.

    My point (and Maria's) is that you MUST make sure the procedure being recommended is the right one, done at the right time, by the right surgeon. Please consider (seriously) having her seen by the ortho team at Shriners in Philly. The worst that would happen is that they agree with your local doc and then you'll have peace of mind knowing you tried as many avenues as you knew possible. That's not a bad "worst" outcome, IMHO. I would hate for any parent to find out there was a better option at any given time for their child. Each patient is very different, and requires unique care. The team at Shriners in Philly sees many kids like this, not like the typical ortho who may never see a complicated case like your little one.

    Like Maria said - our hearts are with you and we wish only the best for you and your family. No offense intended in any way.
    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/

  13. #13
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    Aug 2004
    Location
    ny
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    Hi Kerina and Carmell,

    Not to beat a dead horse, but I just wanted to add one more thing. My son was being seen by a highly recommended doctor from the Hospital for Special Surgery in NY for over three years before we found Shriners. While she may have been very well regarded, I could see that most of her patients were the more typical scoli patients (teenagers - mostly girls) and that she rarely saw infantile scoliosis cases. She was against the stapling surgery that David ultimately had becaues she considered it "still experimental".

    She was ultra conservative in her approach which in my opinion was not the best approach for David. The doctors at Shriners are pioneers. Or, as Dr. Samdani referred to Dr. Betz, as a "true visionary". They come up with options that other "good" doctors wouldn't even think of. I know this from personal experience.

    Now I promise that's all I'll say on the subject

    More hugs,


    It was VERY tough to go against her advice but I followed both my heart and my head because sometimes you just know what you must for your child.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  14. #14
    Join Date
    Jan 2006
    Posts
    78
    Hi, Kerina
    I was reading through the posts about your daughter and I agree with the other moms. Although my son does not have congenital scoliosis he does have severe CP and a multitude of other medical problems since a baby. I seeked a 2nd opinion before making up my mind about spinal fusion for my son. I knew he would need the surgery no matter which doc I went to. But I sought out the 2nd opinion because I knew there were a couple of different approaches to the surgery as well as hardware used. Both docs agreed on their approach but the hardware differed. Also, it helps to decide which doctor you feel most comfortable with and trust with your child's care. In the end I still went with his original orthopaedic dr. since all of his specialists were at Children's and it was closer to home. But it gave me peace of mind that both docs were on the same page with the second opinion. In your daughter's case I would definitely seek another opinion because there may be other options besides surgery or to at least hold off til she is older. As a parent of a child with special needs you need all of the info. possible to make the best decisions for your child's care. Sometimes that means seeking other doctor's opinions and not just taking one doctor's word for it.

    When you go see the dr. for a second opinion just make sure you take her x-rays and medical records with you to the appt. I wish you all the best!

  15. #15
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    Aug 2004
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    ny
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    Hi again,

    Another member, who goes by the name "PaulsMom" also had a similar situation. Her son was 15 months I believe - and she went to three different specialists who had three different ideas about how best to proceed. She weighed all the options and went with the one that seemed like the best approach in her and her husband's opinion. So you are not alone

    (You can look at her posts and if you like I can even put you in touch with her because we sent several e-mails back and forth and have kept in contact. Paul, by the way, is doing quite well last I heard.)
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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