Thomas was born at 32 1/2 weeks on October 19, 2002 (Due 12-09-02) 3 lbs 15 1/2 oz ; 16 1/2 inches long. Thomas is a healthy boy today because of modern medicine. If he was conceived only a few years ago he would not have survived.
He was an identical triplet, but his brothers were conjoined twins. The twins had no chance of survival, but were threatening the third baby’s life. As a result we made the tough decision to have surgery in San Fransisco that would stop the sharing of blood through Twin Twin Transfusion and save Thomas. We had full knowledge that the twins would not survive the procedure.
Many weeks later an ultrasound showed Thomas had Amniotic Band Syndrome. He had a band wrapped tightly around his left leg. His foot was VERY swollen, but showed good blood flow. We returned to San Fransisco for surgery to save his foot. The surgery for the band was performed under general anesthesia. Thomas was also anesthetized. It was done with the use of ultrasound. A large incision in my abdomen was made to allow for maneuverability of my uterus. The incisions in the uterus itself were tiny, allowing for a small camera and the cutting instrument. The band itself was so tight that they actually had to cut Thomas’s leg across the band to get it to release. There was minimal bleeding on Thomas’s part, but I had a large amount that was discovered later in ultrasound as a large blood clot. On the fifth day after surgery I suddenly began gushing blood and they did everything they could to keep me from going into labor. (I was only 26 weeks!) They decided later that it was actually residual blood from after surgery that finally made it’s way down and out.
The risks of fetal surgery are huge, of course. Since this was my second surgery on Thomas, my water did break and I was in the hospital on bed rest for 2 months until he was born. I was lucky. Most people whose water breaks go into labor within days. They were able to stop mine and hold it off for another 6 weeks. A much healthier age for a preemie!! They were prepared for that possibility, though. I had already been given the steroids to help his lungs develop quicker. We were willing to risk labor, though, to try to save his foot. That risk paid off.
Thomas’s foot was swollen, but healthy. He also had a band around his left wrist which is minor and may require surgery later down the road if it starts to constrict blood flow as he grows. Most people (including the doctors I was transferred to in Oregon) assumed I would require a C-Section, but since all 3 incisions on my uterus were so small I was able to have a vaginal delivery.
Thomas had plastic surgery, Z-plasty, (December19, 2002) to remove remaining scar tissue around his ankle. He should has full use of his foot and has no defects as a result. After his surgery his foot perfectly normal in all respects except for a scar around his ankle. What a miracle!
As far as I understand, this was the first amniotic band release done in San Fransisco. Obviously, not a common procedure. Probably because most people don’t have as many ultrasounds as I did, so it isn’t discovered until birth or, more often, until the baby dies in utero.
After all he had been through, in January 2003 Thomas was diagnosed with Pulmonary Stenosis and had open heart surgery on March 28, 2003. After only 4 days in the hospital he came home for good! He is the treasure of our lives and I would do it all over again in a heart beat. Thomas’ magnetic personality is laughable. Wherever we go people notice him with his toe head blonde hair and light blue eyes, and he makes them smile. Unbelievable little boy!
In May 2007 we had a second healthy son, Peyton, with absolutely no pregnancy complications.
Also, I have worked for the last 4 years writing my extensive story and turning it into a book. It is now published and being released on August 7th, 2007.
Thank you for reading Thomas’ story.
Andrea wrote a book about their experiences. “Expect a Miracle: Unwavering Faith Through Fetal Surgery”
3 thoughts on “Thomas’ Success Story”
Thank you for sharing…my grandson at 19 weeks just had fetal surgery (ABS). Your success stories give heart and hope. xoxo
To Young Mothers of Children with ABS,
I am a 62 year old woman with ABS that left me with a club foot, a cleft lip and palate and a misshapened hand. Many childhood surgeries were challenging, but today I am a happy and successful teacher working with children who have learning disabilities. Luckily, I had a very loving family with a mother who believed in me, advocated for me and pushed me to be independent.
The journey of life has its ups and downs, its sorrows and joys. When we hold the grief and the gratitude in balance, all is well.
Hi Andrea, i am so thankful for you to publish this story. Im only at the begining of my pregnancy at 13 wks but at my 12 wk NT scan they diagnosed my with a possible amniotic band. I am about to see a specialist in a few days but until then its a nightmare. I looked up this condition and almost got a heart attack but then a friend suggested to look up success stories in the meantime instead and I am eternally grateful for you for sharing your story. I hope Thomas and Peyton are well and
wish you and your whole family all the best,
Comments are closed.