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Thread: Had to share

  1. #1
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21

    Had to share

    I just had to share my news. After dealing with Dr. Blakemore at childrens for almost a year now and having such difficulty with her, we've finally decided to go to Dr. Betz at Shriner's Hospital. We sent off the application and a letter to him last Thursday and my husband got called by his PA yesterday to get some more information.

    For those that don't know my story - my daughter was born with 3 major birth defects:

    1) Pulmunary Artresia/Tetrology of Fallot - had open heart surgery at 8 days old and will have at least 2 more.

    2) Cystic Kidneys - Only one is working

    3) Congenital Scoliosis - she also has fused ribs. We have hemivertebrae, butterfly and fused.

    The doctors for both the heart and kidney have been absolutely fantastic with her and working together so we decided to stay with the orthopedic dr (Blakemore). However, from the get go - I did not have warm fuzzies with her. My husband figured she and I just butted heads - so he mainly dealt with her from that point on. However, they wouldn't coordinate with the other doctors at all. When I started asking how VEPTR would affect her future heart surgeries - I got "What she's going to have more?" Then she told me she would talk to the cardiac surgeon/staff. She never did - it took me finding the procedure booklet and giving it to the cardiologist who checked with the surgeon who said it shouldn't be a problem on his side. Then she was scheduled for an MRI - but they didn't tell radiology that Emily needed an anesthesiologist - so if the sedation nurses hadn't called the night before she was supposed to go in - we wouldn't have wasted a day down there. You would think they would have learned their lesson - NOPE. We were scheduled for a CT Scan in late May, but this time we assumed they had gotten the anesthesiologist - we were wrong. I took off work to go down there to find out they couldn't put her out for it and they'd have to reschedule. It was after that I finally had it with this office.

    So I've got a really good feeling about meeting with Dr. Betz. I was just so excited I wanted to share
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  2. #2
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    I just love looking at all these baby pictures. What a beautiful little girl you have! Those big blue eyes can win anyone over in a heartbeat.

    Chris

  3. #3
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21
    Thanks we think she's pretty special!
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Great news, Erin. I'm glad you are moving forward for her. You have to go with your gut feeling - if you are not feeling 100% confident in the doc you are seeing (for whatever specialty needed) find another one. I hope Dr. Betz will be able to give you good information that is specific to her, and can help you lay out a "game plan". Keep us posted on when you meet with him.
    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/

  5. #5
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21
    We just got great news.. our appointment is next Wednesday - I'll let you know how it went.
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,757
    Kerina,

    I'm sorry to hear about what you went through with Dr. Blakemore.

    I know the PA you spoke about at Shriners personally - and I can assure you that your daughter will be given all the time and attention she needs and your entired family will be treated with dignity and respect by the entire staff from the moment you check in at the lobby.

    My son has been going to Shriners in Philly for nearly four years. Dr. Betz was always part of the team that treated my son - and now that the lead doctor on my son's case (Dr. D'Andrea) is leaving, Dr. Betz will be taking over that role. I was thrilled when I was told it would be him, because in the years I have been going to Shriners I can't tell you how many parents I've met who have raved about him, many telling me that he helped their child when nobody else could. I am confident that not only will he have a plan for your daughter, but it will be the best possible plan for her particular situation.

    Best of luck next Wednesday and please keep us posted. Also, feel free to e-mail me with any questions about the hospital, staff, etc. They offer many services to families and I'd be happy to share what I have learned these past few years with you.

    P.S. Loved the photos - she's beautiful!!
    Last edited by mariaf; 07-13-2007 at 06:23 AM.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  7. #7
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112
    Hi Kerina,

    First of all let me just say your daughter is just precious with extremely beautiful eyes.

    I am sorry for your experience with Dr. Blakemore; but rest assured you've made a wonderful decision in seeking Dr. Betz, he as well as his entire staff are wonderul.

    Ditto on everything Maria has said I couldn't agree more.

    Keep us posted.

    Amanda
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  8. #8
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21
    Thanks everyone. I may be in touch after our first appointment on Wednesday. My husband usually takes care of the appointments - as he's the stay at home parent. But initial ones - I like to be there. So I'm sure once the appointment is done, I'll probably have a lot of questions.
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  9. #9
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21
    Well the appointment went very well. I'm VERY impressed with the PA and Dr. Betz. They really seemed to know what they were talking about and there was no talking of fusion (Yea! - which Blakemore did)

    It appears because of all the anomolies that she will be having a bi-lateral VEPTR. They measured her at a 73 curve. They don't want to do anything to her until at least 2. We'll be going there quarterly - to see if the curve gets worse - if it doesn't we're looking at doing the surgery around 2. So now all I'll have to do is keep up with the cardiac staff to make sure we don't need to replace the conduit around 2.

    I'm actually quite happy right now. Everything seems to be working out great!

    I'll keep you posted on any new developments.
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  10. #10
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,757
    Kerina,

    That's great news! You sound SO happy!

    I'm happy (but not at all surprised) to hear that you really liked Dr. Betz and Janet - I knew you would.

    I'll be hoping the good news continues. I have heard many VEPTR success stories and am hoping Emily will be yet another.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  11. #11
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Thanks for the update, Erin. Sounds like things are moving in the right direction. You have a good plan for her and have great people looking after her. It's nice to hear that there is nothing that needs to be done immediately - no emergency. You can enjoy life and continue the quarterly appointments to watch her spine. As with all new medical technologies, the VEPTR is being improved every day. I'm very happy to hear there is an alternative to fusion. Let us know how things go.
    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/

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