I'm curious how everything is going? If you'd stayed with this pregnancy? Best of luck
Hi Anita,
I just saw your post from May 1, 2013 and wanted to reach out to see how you are doing with your pregnancy.
I am 36yrs old and I have VACTERL Syndrome.
For those who don't know, VACTERL is an acronym. Each letter represents a part of the body that can be affected. In the beginning it was called VATER Syndrome but the ‘C’ for Cardiac and the ‘L’ for Limb was added so it’s called VACTERL Syndrome. The letters stand for V-Vertebrae, A-Anus, C-Cardiac, T-Trachea, E-Esophagus, R-Renal (kidneys) and L-Limb.
I was born with the V, A, C, R and L. I was born with Congenital Scoliosis, Hemi-Vertebra, a Hypoplastic 4th rib on the left side, Dislocated Hips, Imperforate Dislocated Anus, Recto-Vagina Fistula, Ventricular Septal Defect (dime-sized hole in my heart), Single Functioning Left Kidney and Ureters were not located on the bladder where they should be, Radial Club Hand w/4 fingers and no thumb, Calf Muscles missing in my right leg, and my Right leg is shorter than my left leg.
I’ve had 23 surgeries. I still have some issues that I deal with mostly my back and spine.
I don’t know how severe your baby’s problems are. I just wanted to let you know that there are people with VACTERL who are also dealing with this. If you have any questions, please don’t hesitate to ask. Also, there are several groups on Facebook for parents with VACTERL children. It would be a great place to talk with other parents and ask any questions you might have.
Please let me know how you are doing.
Sincerely,
CharlieRae
So sorry to hear about your pregnancy struggles. You have a very difficult decision to make and in this case you need to follow your heart. They say that everything happens for a reason. We are just too 'clouded' to see the big picture. Whatever you decide to do, I wish you strength, inner peace and a lot of love.
As hard as it is, its a decision only you can make. Some women would continue on and prepare themselves for the rough road ahead while others would choose to end the pregnancy. Prayers are with you as you make this difficult decision.