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Comments by Jimmie on Thursday, January 31, 2008 IP Logged
My son Luke was born with a type IV SCT. A mass was noticed at our 18 week ultrasound but no one kenw what it was. Once he was born an MRI indicated it to be a SCT. Before he was 12 hours old he had a 5 hour surgurey to remove it and his tailbone. He spent the next 2 weeks in the NICU but came home healthy. He will be a year old tomorrow Feb. 1st. He will probably never be able to urinate on his own due to the nerve damage to his bladder from the large tumor so my wife and I have to catherize him 6 times a day. He is so strong and I can not even picture our lives with out him. These kids get some extra strenght, I know he has been through more than I ever have. We have had one follow on surgery to bring his testicals down at 6 months. So far his blodd test are going good and his numbers are coming down fast. Your website is great and to anyone that has a child or is going to have a child with a SCT always keep the faith. Special people get special children.
United States

Comments by Kristen Ruffner on Friday, January 11, 2008 IP Logged
Your email has been a blessing to read for my husband and I both. At 19 weeks, our baby was diagnosed with SCT. We have been referred to an excellent perinatologist, had an amnio with a normal AFP result...and our next appointment is Childrens in DC to get an MRI. We are very spiritual and have numerous churches praying for Kaydence's survival. Currently almost 21 weeks pregnant now, I am so scared that the teratoma will continue to grow. The ultrasound 2 weeks ago said it was around 5.17 cm. Please add us to your prayers for the best possible outcome. Thankyou for sharing your story and photographs.
United States

Comments by Lauren on Friday, January 04, 2008 IP Logged
My daugther was born at 28 weeks gestation on 12-19-07 and had her surgery yesterday (they had to wait until her lungs, heart, and brain were more developed). The tumor was largely external, but it did extend into her abdomen up to her ribs which estimated the surgery to last around 9 hours if we were lucky especially since she was so premature. Well, we were more than lucky - she is our miracle baby. She came out of surgery 4 1/2 hours later and remains stable. I'm going to be with her today, but please place her in your prayers so that she can pull through this all the way.
United States

Comments by Bethanie(age 14) on Thursday, January 03, 2008 IP Logged
My youngest brother was born with an SCT in december 2005 and at the age of 2 days old he had to under go a massive operation for ten hours to remove it. It was a very scary time for us all but thankfully he suvived and has just celebrated his 2cd birthday and is a happy and healthy toddler. We love him very much and just thank god he suvived to brighten our days. to anyone who has a baby with an SCT please don't worry and just pray they'll get through it.
United Kingdom

Comments by Michelle on Monday, December 31, 2007 IP Logged
This website is great my daughter is currently in hospital recovering from having the tumour removed it wasnt detected until birth, she had the operation at 5 days old and is currently 9 days old luckly it was only external and measured 8x5cm so we feel really lucky after reading and seeing the size of the childrens tumours we are hoping that she carries on being strong.
United Kingdom

Comments by Trudy on Tuesday, December 18, 2007 IP Logged
This was very inspiring for me, my niece was recently told her baby has this condition so it's been quite a challenge for us learning of how fatal it can be.

Comments by Carrie Weaver on Thursday, November 08, 2007 IP Logged
I live in maryland and have a daughter who just turned 3 on nov 3rd. She was born with the sacrococcygeal teratoma also. Hers was only 6 cm and was also all external. No internal organs were affected by this rare problem. I have never read any other story about this so it was very interesting. Thank you for sharing and I am very happy for you that everything turned out well for you like they did for us. 320
United States

Comments by Julie Wismar on Thursday, August 02, 2007 IP Logged
My beautiful daughter Anna is an SCT survivor. Her tumor was internal and external and weighed 1 pound. (she only weighed 3 pounds.) She turned 15 on July 29 and is happy and healthy. She has a neurogenic bladder and bowel due to the removal of the teratoma and the damage to nerves in her lower spine but it has not slowed her down or caused her life to be any different than any other child's. She is involved in many sports and is a great dancer. When I was looking for answers in 1992 when she was born there was nothing available to me for support. This is a wonderful sight. God bless you and all those parents and children that are living with an SCT diagnosis. Keep your faith strong.
United States

Comments by Donna on Thursday, July 19, 2007 IP Logged
I too am the mom of a SCT survivor who is a boy. Dustin is now almost 6 years old. He is doing well too. He had a reoccurence that was removed (and found to be mature) in April 2006. I want everyone to know that Dustin's AFP NEVER went up. It remained at a level around 2.0. Dustin had begun limping and after being blown off by doctors (who xrayed his feet and legs), I finally got one to order a MRI of his pelvis and it was found. He also has hypothyroidism and is severely latex allergic. He also has reoccuring croup. But, after being given a 5% chance of survival at birth (he was also born not breathing), I think he is doing wonderful!! Thank you for creating this website to help other SCT parents out there. I remember not being able to find too much information about SCTs, and especially not much about boys with them.
United States

Comments by iva lee thrift on Thursday, June 21, 2007 IP Logged
Such adorable children God has blessed you with. Absolutely beautiful....
United States

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