Ryleigh's Story
I found out I was pregnant in early August of 2004. Though surprised, I was very excited! I never thought I would have another child after having my son Drew 9 years earlier. I went through the pregnancy feeling nauseous and losing weight until the last trimester. I even had a trip to the ER in September because of dehydration. Because of a traumatic childbirth experience with Drew, I was scheduled for a C-Section at 38 weeks. After conferring with my Nurse-Midwife, I declined the AFP screening test that checks for certain birth defects. At the time, I felt as though I had made the right decision. However, as the pregnancy progressed, I developed a feeling that something was wrong and that my little girl would be born with a problem. I read all I could on Down's Syndrome and Spina Bifida. When the final ultrasounds rolled around, they assured me that everything was fine - nothing abnormal showed on the scans.
Ryleigh Quinn Christian was born at 8:02am on March 23, 2005 weighing in at 8 pounds, 12 ounces and 21 inches long. When I heard her cry, I cried with her - that was my signal that everything was alright (her older brother Drew was not breathing when he arrived). Then, suddenly, the atmosphere in the surgical suite changed. There was whispering as they examined her, my husband went to talk to the doctors, and all I was told was that her buttocks were asymmetrical - one cheek was bigger than the other. There was talk of hip dysplasia and one of the nurses told me not to worry - that her daughter had to wear a brace to correct her hips, but she was fine now. At the time, that was honestly my biggest fear - that my little girl would be confined to wearing a brace for several months (or more) of her life. I was worried that it would hinder her growth. Boy, what did I know?
When they examined her buttocks the day after delivery, it felt different than it had upon birth. Then, at her follow up after meeting with the orthopedic specialist a few days later, it had changed again. This time they were able to move what was apparently some type of mass back and forth. I was told it was "cystic" in nature. We were referred to radiology for an ultrasound. They did the ultrasound and the technician left to get the radiologist. After conferring with colleagues, they diagnosed her with an internal Sacrococcygeal Teratoma (SCT). It filled her entire pelvic cavity and had moved some of the organs out of the way, which explains why her urination and bowel movements were erratic.
We immediately met with the surgeon and his resident, who explained that we now needed an MRI and surgery as soon as they could get a room. After talk of possibly admitting her that day, they told us to come back the following morning for an MRI, then return the day after that to check in for surgical preparation and surgery on the following day. They admitted my 15-day old little girl for surgery on her 16th day. There was talk of blood transfusions, concern regarding her bowel, possible consequences of surgery - all types of scary talk. I can't tell you what goes through your mind. They said the surgery would last 3-5 hours and that they would call hourly. They called once to let us know they were underway, once to check in an hour later, and once more after only 20 minutes to let us know that they were done! She was coming out of surgery and had made it through perfectly fine! A few days later, Pathology confirmed that the tumor was benign!
My children have wonderful pediatricians (by the grace of God, their primary care physician is a hematology/oncology specialist). After yet another MRI, they are convinced there is no tumor regrowth and her AFP level continues to drop and is now in the adult normal range.
Ryleigh and big brother, Drew, Christmas 2005
Today, Ryleigh is a happy, thriving, healthy, active, and normal 10-month-old. She took her first unassisted steps today and has been crawling for over a month. She says several words and knows some signs. I am convinced that God has a great purpose for my two blessings and I thank Him for the opportunity to be their mother. I learn so much every single day from them - they are the world's best teachers.
Just a comment: If you have heard those scary words "sacrococcygeal teratoma," don't feel as though all is lost. As scary as it may be, these babies are stronger than they appear and they are fighters. Don't get discouraged by the studies you may find on the Internet - a lot of them show bleak prognoses and are outdated. Walk by faith, join support groups, and contact the best children's hospitals.
Stef Christian
Drew & Ryleigh's mom
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May 02. 2007 08:01:47
