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
I don't understand half of that. Please consult with your doctor for your best options. Anyone else have advise for her? Bump?
While I dont know much about all the suggested problems of your child, I can only give you my opinion on the matter for whatever it may be worth to you. Question A- My personal reccomendation would be to continue with the pregnancy...my readons are as follows,1- medical science has not completely perfected determining "birth defects" with complete accuracy. I personally known several cases where doctors predicted "abnormalities" and baby was born well and healthy with no problems. Others were born with problems, but far far less severe and much more treatable than first indicated. 2- If you feel reason one was false hope or wishful thinking, my second reason for continuing with pregnancy is this. I have had the priviledge to know many children with severe medical problems and disssbilities. They all had one thing in commen, a cheerful, fighting loving spirit that refused to give up when faced with overwhelming odds. This child could bring such a joy into your life you may not have ever known. I have no other reasons than this and finy know if it helps. But i have to believe this baby is inyour life for a purpose, a reason. I pray you may find some peace in this storm Anita.