I realize now though, that sharing my experience and the experience of so many who have dealt with any type of fetal syndrome can give a voice to a topic that is so unknown to many.
The best place for me to start is at the beginning....let me share...
It all started almost 8 years ago in 2003. The news of twins was surreal. We had been trying to get preggo but never expected this. Twins don't run in our family. We were over the top with joy. That joy was short lived.
Our Dr. detected an abnormality on an ultrasound when I was only 10 weeks along. Not sure what it was, if anything, she had me come back the next week for a better look. I was quickly referred to a local fetal specialist who gave us an official diagnosis of TTTS with and an Acardiac Twin or twin to twin reversed arterial perfusion (TRAP) syndrome.
Twin to Twin Transfusion Syndrome (TTTS) affects 1 in 7 monochorionic (shared placenta, identical twins) pregnancies and, if left untreated, has a near 100% mortality rate.
An acardiac twin or Twin Reversed Arterial Perfusion (TRAP) syndrome is an unusual form of TTTS. In these twins, one twin develops normally while the other twin fails to develop a heart as well as other body structures. The abnormal twin is called an acardiac twin. In these pregnancies, the umbilical cord from the acardiac twin branches directly from the umbilical cord of the normal twin. Blood flow to the acardiac twin comes from the normal twin which is also known as a pump twin. Without treatment, more than 50% of cases of TRAP will result in the death of the pump twin.
Because TRAP can sometimes be difficult to explain or read about, HERE is a link if you want to know more.
He then referred us to one of the top fetal specialists and surgeons in the U.S., Dr. Ruben Quintero in Tampa, Florida. We were the 80th diagnosed case.
Thankfully, the diagnosis was made very early on in my pregnancy. At 24 weeks we flew to Tampa, FL to see Dr. Ruben Quintero for an umbilical cord occlusion. At that point, the "pump" twin was almost 30% smaller than the acardiac twin. Of course, we were given all of the scary statistics of what could go wrong. They said there was only a 66% chance that either baby would make it and a greater chance of a neurologic injury during the in-utero surgery.
Honestly, I don't remember a lot of the details of the pregnancy I was pretty numb. I think I was emotionally detached because of fear of losing both babies. There was so little information or support regarding TTTS and TRAP. We were even advised 3 times to abort the pregnancy.
I do remember every detail of meeting Dr. Quintero and his staff for the first time and remember feeling so much relief because they had so much knowledge about what I was going through.
I was awake during the surgery and through tv monitors and a camera inside the womb I was able to see both babies. It was amazing and bittersweet.
We lost Eugene Paul as soon as the surgery was completed.
After flying back home I was on strict bedrest and monitored weekly with ultrasound. At 29 weeks I had a rupture in the membrane which caused the amniotic fluid to leak. I was put in the hospital on strict bedrest for almost 2 weeks. At 31 weeks I developed an infection of the amniotic fluid and delivered via c-section. I choose not to see Eugene Paul. Sebastian Allen was born weighing a hefty 4lbs 8oz. He only spent 1 week in the NICU.
He was perfect! Strong, healthy, and beautiful! Nothing like what I had imagined or what the Dr's had prepared me for.
The Fetal Hope Foundation that educate and support families who are dealing with similar circumstances. The donations that people make to the Fetal HopeFoundation go to not only raise awareness, but to help families with travel expenses and treatments.
Now, to the main point.....It took a while huh?I am running the Rock n Roll Savannah Marathon on November 5th, to raise money for The Fetal Hope Foundation. My goal is to raise $1000.00 by November 5th. I would love it if you would support this cause as well.
Thank you for allowing me to share with you a piece of my heart.
God is good, all the time, even when our circumstances say otherwise.
Grace and peace,