Odessa's Story
My pregnancy with Odessa was healthy and normal throughout the first 4-5 months. I felt so good compared to my pregnancy with her 2 yr old brother (6 mo of full- day nausea). At 16 weeks I had a standard ultrasound to see what gender baby I was to have--It's a GIRL! I was so excited and we left the doctors office with no hint of what was to come.(they did not see the teratoma at that time) at about 6mo pregnant, I began to feel very uncomfortable, this pregnancy was feeling so different from that of my home birthed 2yr old.
I began to contact all the midwives in town --some thought my baby was breech, others thought I might have twins, they just couldn't figure it out! meanwhile, I felt like my rib cage was going to burst from all the pressure. After a while, the discomfort was unbearable, my fundal height was a 42in at only 32 weeks it had to be twins! We scheduled a second ultrasound and the radiologist was being very quiet...too quiet! "Is it twins I asked?", "no"she replied. she left the room and sent in a doctor who gently explained that the discomfort I was feeling was do to a SCT. He went on to explain what a teratoma was and what we should expect for our daughters birth. I was put on bed rest (very difficult with a 2yr old) and sure enough, my waters ruptured at 33.5 weeks. A cesarean was performed and I remember feeling so happy to hear my daughter's sweet voice as she was delivered....
Odessa weighed 3161 with her teratoma, 1983 without. It had a partially interior component, mostly external, and was extremely vascular. At the time of her birth, the teratoma had hemorrhaged and she went in for surgery immediately. She was born at less than 34 weeks. Odessa underwent an 8hour surgery with both a pediatric surgeon and a vascular surgeon present. She underwent a blood transfusion and I think was given high levels of "gentimiacin", a strong antibiotic (I'll explain later why this is a concern). She was in critical condition for days after. She experienced edema after her surgery and was given a diuretic called "furosimide". After 26 days at the NICU, Odessa Mandala came home.
Now, Odessa is a chubby 16 1/2 lb 6mo old (corrected age). She loves breastfeeding and is alert and happy, as well as extremely determined! She is now sitting up on her own. Odessa suffered some nerve damage and is lacking a portion of gluteal muscle on one side of her buttocks. She currently has a double-barrel colostomy which was supposed to be temporary. There is concern that she does not have sufficient gluteal/rectal muscle to be continent but nobody is sure at this point. She has a "heart shaped" bladder that is only neurogenic on one side! So far there is no reflux and no need to catheterize. Odessa has profound hearing loss and we suspect this may be from the "ototoxic" drugs she was given during surgery. She is an amazing gift, a true survivor, and will always be a teacher and guide to everyone she touches. I thank all our family and friends, doctors and nurses, for their positive energy and prayer through this incredible, challenging, miraculous, and sometimes scary experience. Blessings to all the children and families who experience SCT's. Odessa Mandala Odessa with big brother
Below : Odessa with her big brother
