Sienna's Story
When I was approximately 11 weeks pregnant I went to my OB/GYN due to some "spotting". My OB/GYN decided to do an ultrasound. During the ultrasound, the tech noticed a "shadow", and call my doctor in to look. After a few minutes my doctor told me he wanted me to go to a specialist, a Maternal-Fetal Specialist. He wanted a specialist's opinion on what he was looking at. My OB/GYN did say the words Sacrococcygeal Teratoma (SCT) - but it didn't mean a thing to me. They scheduled an appointment with the Maternal-Fetal Specialists the next day.
I took a four hour drive the following day to be seen by the Specialist. Once he preformed the ultrasound - he confirmed the SCT. At this time the specialist told me if I wanted to abort my pregnancy - he would understand. He informed me that he had only dealt with a few SCT's and they did not end very well. At that moment, I informed him I would take my chances and I would continue with my pregnancy. He said he would see me every two weeks at his office (fours hours away). The weeks I did not come and see him, I would be seen by my regular OB/GYN for ultrasounds.
When I got home the following day - research was on. I found out anything I could regarding SCT - the good and the bad. I wanted to know what was going on with my baby. During my research - I made contact with Dr. Harrison in San Francisco. He agreed to help follow me through my pregnancy with ultrasounds and that he would report anything on to my Maternal-Fetal Specialist.
I worked through my entire pregnancy. With the direction of Dr. Harrison my Maternal-Fetal Specialist and I decided I would deliver Sienna vaginally. At 37 weeks - I went in for an amnio - Sienna's lung weren't quite mature - but close. But, she had a bowel movement and my Maternal-Fetal Specialist decided it was time to deliver.
I was admitted the evening of September 14, 1998. That evening the nurse started to ripen my cervix. The morning of September 15, 1998 I was induced. Once I dilated to 7 the Maternal-Fetal Specialist drained the SCT (with a needle kind of like an amnio). Over ½ gallon was drained. I was able to deliver Sienna vaginally. 30 minutes of pushing and my miracle baby was in my arms - straight up high noon. Sienna was admitted into NICU at 12:07 pm. I only held her for a minute before she was rushed off. Her SCT did start filling back up.
Surgery was the following day, September 16, 1998. It lasted a little over 4 hours. All went well. Her tailbone was also removed to help keep the SCT from returning. It took several days before they took her off the ventilator. On Saturday, September 19, 1998. I held Sienna for more than 1 minute. I was able to hold her as much as I wanted, the ventilator was OUT!
Right about that same time, the nurses noticed in the NICU that Sienna wasn't wetting her diapers like a new born should. After a couple tests on her bladder and bowels, she was diagnosed with Neurogenic Bladder and Bowels. They taught me how to catheterize her and the next day I brought Sienna home. I had to continue cathing Sienna. Also, once she was taken off of breast milk - her stools became too hard for her to pass and she became constipated all the time. With the constipation - Sienna was on a couple different stool softeners.
Both the cathing and the stool softeners went on for many years. February 2002 - age 3 ½ Sienna went to The Children's Hospital in Denver, CO to have two procedures done. Mitrofanoff and ACE. The Mitrofanoff allowed Sienna's to relieve herself thru her belly button. They used part of her appendix to route her bladder to the belly button. Since Sienna does not have the feeling of being "full" she must cath herself every 3-4 hours to empty her bladder.
The ACE allowed Sienna to clean her bowels out every evening. The rest of her appendix was used to route her bowel to a send belly button on her right side. Every evening Sienna places a catheter into the ACE and allows approx 700cc of normal tap water to run in. That takes about 15 minutes, then she must stay on the seat for about another 45 minutes for her bowels to clean. No more constipation.
Today, December 2004 - Sienna is a 6 year old and in full day Kindergarten. She is able to do everything a Kinder child should be able to do. Except - she gets to go "empty" herself in the rest room at the nurse's office. She is able to cath herself on her own. Sienna doesn't know any different. In fact - she likes to tease her family that she doesn't have to undress to "empty" herself.
