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Comments by Christa on Thursday, September 13, 2012 IP Logged
Hello! I am blessed to have happened upon this website. We welcomed our baby girl Macy on March 6, 2012. It was a wonderful moment that was forever changed by a diagnosis of an SCT.
I tested positive for the downs syndrome screen at 18 weeks, had a genetic marker ultrasound as well as an amnio....all markers for downs were negative, but her sct was missed. I truly believe this to have been a blessing as I was able to carry her to term, with very little stress.
She has astounded us with her strength and determination. We welcomed her home after a month in the hospital and though we have more surgery and long term follow up, we are hopeful that her prognosis is good.
I would love to connect with some other parents to learn what some of the long term affects are, as we are expectin a few (with bladder/bowel, leg function etc).
All of these babies are miracles! And God Bless the incredibly talented surgeons that have helped out little ones.
Christa
Canada

Comments by Ashley on Tuesday, March 20, 2012 IP Logged
Thank you for sharing your story. Our daughter has been diagnosed with SCT (currently at 28 weeks) and it is really helpful to hear from other believers whose child went through surgery and is doing well!
United States

Comments by Ashley A on Wednesday, June 29, 2011 IP Logged
I would just like to say, I am so glad that there are parents such as yourselves that dedicate their time to helping other parents and family memebers through their time of need.. Even with out meeting them face to face. I am an SCT survivor my self and never fully understood this until recently when i was talking Anatomy and Physiology for Nursing school. WOW... i cant imagine what it was like for my family back in 1984. So I truly hold you and Elijah in a very special place in my heart!!! As well as of other the other child that did or did not make it thorough their battle. Thank you for your time.. Just know that i am currently 27 years old and i have three children of my own. There is life beyond this!! I am proof.... May the Lord continue to bless you and keep you and your family forever!
_Ashley Artiaga
SCT Survivor-1984
United States

Comments by Marianne on Saturday, February 05, 2011 IP Logged
Our Daughter was born with a sct. I delivered her at 38 weeks c-section. Her tumor was removed at 1 day. At 16 months of age her tumor had returned and she underwent chemo and more surg. she is now a happy healthy 16 yr old! a year prior my husbands sister had a baby girl at 26weeks. Her daughter also had a sct. She will be 18 this July. She alot of scarring and is deaf and autistic. They are our little miracles!
United States

Comments by Arlete Kanode on Tuesday, February 01, 2011 IP Logged
Thank you so much for putting this site together. It gave me answers that I wasn't able to find any where else. It also gave me alot of hope during such a difficult time. We found out our daughter had SCT type I at 18 weeks. Unfortunately she past a few hours after delivery on 12/20/2010, we were only at 29 weeks.
United States

Comments by Julie Baker on Thursday, July 22, 2010 IP Logged
Hello, thank you for sharing your story. Our little blessing Daniel James was born on 7/4/08 with a SCT and also other problems. It was wonderful reading your beautiful boy's story. God Bless, Julie Baker
Australia

Comments by Jennifer on Saturday, July 10, 2010 IP Logged
I just want to thank everyone for sharing there stories, I am pregnant with our first child and found out that our little girl also has a type III SCT. My husband and I have searched the internet for answers and information but there is limited of either so this site has been a great comfort to us. We live in VA but are currently planning to relocate to Philly so we can be closer to CHOP, they are a wonderful group of doctors, nurses and staff and have also provided us with some hope.
God Bless you all and thanks again for sharing your stories.
United States

Comments by Pam on Monday, July 05, 2010 IP Logged
Thank you so much for sharing your story. My brother's wife went for her ultrasound last Thursday at 20 weeks and was told that she was having a girl, but that she had what is suspected to be the tumor your son had. They live only about 40 minutes from CHOP and have an appointment this Thursday. Thank God for that. I feel that they are in the best place possible. I pray that they have a happy ending like your family. It really helped to read your story and know that there is hope! If you have any suggestions for us, please feel free to email me at pamela4@ptd.net. I would also love to hear an update on Elijah!
United States

Comments by MACDONALD MUPIWA on Monday, June 21, 2010 IP Logged
I HAVE NEWLY BORN BABY BORN ON THE 11TH OF JUNE 2010 AND SHE HAS BEEN DIAGNOSED AN SCT .I HAVE COMFORTED BY OTHER PEOPLES STORIES WHO WENT THROUGH MY PRESENT POSITION.I REALLY APPRECIATE THIS SITE AND I REALLY BELIEVE SHE WILL UNDERGO A WONDERFUL SURGERY AS I AM PRAYING I WOULD BE ALSO LOOKING FORWARD FOR MORE SUPPORT FROM OTHER PARENTS LIKE ME.
Botswana

Comments by Clara Moore-Miller on Monday, June 14, 2010 IP Logged
Thank You for all you do bringing SCT families together I am the mother of a SCT baby who has survived and for four years i was told my son had a HEMANGIOMA we called it his tail we finally found out this jan,that it was a SCT and how grave this can be IT was Removed FEB 1 and it was tested and not malignant He is doing very well and very active.Again thank you for giving us a place. Clara Moore-Miller.
United States

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