About this article: http://www.momlogic.com/2009/11/where_have_all_the_down_syndro.php

So that all the readers will know exactly what questions were asked and how they were truly and COMPLETELY answered - this article does not contain the FULL answers, nor does it give the true reasons that so many (according to momlogic, 92%) women DO choose to terminate a prenatal diagnosis of T-21. Here is the complete Interview and my answers:

1)What is your full name? (If you'd like to be quoted by your first name only, we can discuss that, however I do need your full name for my own records.) Ayliea Holl

2) How many children do you have and how old are they? None living - I've had several miscarriages as well as my termination, and suffer from severe endometriosis and infertility.

3) How old are you now? How old were you when you were pregnant with the child with DS? I am now 45. I got pregnant at age 40 after going through a Laparoscopy and Lupron Treatment for endometriosis - I never expected to get pregnant after my endometriosis treatment.

4) Was that pregnancy in the US or in Belize? If it was in the US, where were you living at the time (what city)? It was in the U.S. I was living in NV - I moved to Belize a few years after my termination.

5) How long have you lived in Belize? Almost 2 years.

6) Can you tell me a little bit about the pregnancy that you terminated. Were you trying to get pregnant? How far along were you before you learned that there were complications? No, I was not trying to get pregnant - as mentioned above I had just gone through treatment for endometriosis. I never even knew that I had endo; if I had known, I would have done something about it years before I did, because I didwant children - I just never thought I could have them. I was not on birth control and I was not "Not trying" - I just couldn't get pregnant. (My complete story is published in the book "Our Heartbreaking Choices" http://www.ourcheartbreakingchoices.com if you are interested.) I was 17.5 weeks when I got the results from the amnio.

7) What were the complications with the pregnancy? How did you learn about them? Because of my age, I was planning to have prenatal testing done. At 11 weeks I went in for a CVS but because my placenta was turned, the doctor could not perform it and I had to wait for the Amnio. I started having severe cramps at about 14 weeks, but no spotting. I continued to have severe cramps off & on, but my doctor did not seem to be too concerned. I had the Amnio done at 15.5 weeks, 1 day before my husband and I were scheduled to leave for Belize for a vacation - we were in the final stages of completing our home here. Since the doctor knew I was leaving the next day, he did not express his concerns about T-21 indications during my amnio. When I returned (after 10 days) I was awaiting results of the Amnio to find out the sex of my baby. I NEVER expected to get a poor prenatal diagnosis.

8) What was your initial reaction? Anguish. I was crushed that my daughter that was truly a "miracle" had a prenatal diagnosis of T-21, with heart and digestive disorders. I wanted her desperately. We were prepared if we did receive a poor prenatal diagnosis because my husband's brother has a severely mentally disabled child. After seeing how they struggled to get funding and assistance with their daughters' disability, and after talking to his brother at length about his daughters severe disability, we knew that we would terminate if we had a poor prenatal diagnosis.

9) How did you make the decision to terminate the pregnancy? As I mentioned, my brother-in-law has a severely mentally handicapped child. We knew how difficult it was to raise a child with a severe mental or physical handicap and we knew that with the statistics of children with Down syndrome, there were no certainties, no guarantees, and with the knowledge that she would have to have open heart surgery at birth (and the distinct possibility that I would not be able to carry her to term) we could not put ourselves, our family or our daughter through all the many surgeries and ensuing health issues; even with surgery for her heart and digestive tract, there were no guarantees that she would live. We just couldn't put ourselves or her through that.

10) How many weeks pregnant were you when you terminated? 18.5 (note - Rhonda sent two number 10 questions - I did not bother to re-number her questions correctly)

10) How did you cope? How would you describe your emotional state before and after the decision? My emotional state - before, was a state of shock. How could "God" give me such a blessing (to finally get pregnant at 40) and then rip my heart out by giving me a child that would not live, and if she did live, she would be mentally disabled and have to endure many surgeries. After my termination, I was grieving. I had just lost a child. It didn't (and still doesn't) matter how you lose a child, you grieve after ANY loss. I coped by finding the discussion forum http://aheartbreakingchoice.yuku.com/directory - I was one of less than 100 members at the time. I became very involved in the forum and the Owner of the boards soon made me an Administrator. I found that by helping others come to terms with their losses, I was helping myself.

11) How do you feel about it now? If faced with a poor prenatal diagnosis, I would do it again. I don't feel remorse or guilt for letting my daughter go, I feel that she is at peace, and I know that having her in my life for such a short time changed me. Going through a heartbreaking choice made me realize how precious life is. It is loving your child enough to let them go without making them suffer; it is having the strength to say that having a child with a severe disability and a life-time of health issues is NOT the life I wanted my child to have. It also made me much more compassionate towards others - it made me see that there is a lot more to having a child than just getting pregnant.

12) What kind of support did you get from family and friends? My family and close friends fully supported our choice and felt that it was the best thing to do in the circumstances. I didn't tell my co-workers that I had terminated. I just told them that I lost my daughter. They were very supportive of my loss, but I don't think that many could understand what went in to our decision to terminate. It is an extremely difficult and personal decision to make, and I don't think any woman who is contemplating termination needs to put herself in the path of unwarranted judgment from those who do not understand.

13) How did you find The Hardest Choice? I presume you mean the discussion group for "A Heartbreaking Choice?" - I was searching the Internet for a memorial site to post my daughter's name about a week after my termination. I found http://www.aheartbreakingchoice.com, requested a memorial for my daughter in their Memorial Rose Garden and found the link to the discussion forum there. I have been a member since April, 2005, and an started helping with Administration in 2006, and took over as the lead administrator in 2007.

14) When was the site founded? I believe the website was founded in 1996, the Discussion forum was founded in 2005.

15) How many members does it have? When I joined, around 100; it now has over 1100 members. It is an International site, and we have members from across the world. There are 4 volunteer administrators (including me), and several moderators. There are separate boards from women going through their termination to women going through a subsequent pregnancy after their termination. This discussion forum is and has been a life-line for many women, and will continue to be so for as long as there is a need and volunteers to administer to it. We do not judge a woman's decision to terminate for medical reasons, we simply offer love and support for those who do make this most "heartbreaking" of choices.

16) How did it help you? It was a private place where I could write about my feelings, my hopes, my disappointments and my religious beliefs with other women who really understood what it was like to make this decision, without ever feeling judged. The women there helped me work through my anger and grief and helped me cope when I couldn't get pregnant again. They helped me understand my loss of faith and come to terms with the changes in my religious beliefs. I didn't lose my faith due to making the choice to terminate, I just questioned it after having gone through AHC and subsequent infertility and miscarriages. The women here are incredible - loving, sharing, of many different faiths and beliefs, but we all have one thing in common: we chose to let our children go. We gave them peace.

17) Are there other resources that are similar to it, or do you think that it's a unique group? There are a few on-line resources for women who have lost a child, namely at babycenter.com (a friend of mine is the moderator at their "Termination for Medical Reasons" board), and a few that are infant loss and/or abortion support groups, but honestly "A Heartbreaking Choice's" discussion groups are pretty unique.

18) How helpful/plentiful are the resources for women who've terminated pregnancies for medical reasons? Honestly, I don't know that there are a lot of in-person resources for women who have made the choice to terminate for medical reasons. It still seems to be so taboo, which is really unfortunate because there are SO many other reasons (besides T-21) that a woman makes a choice to terminate. Anencephaly, severe hydrocephalous, T-18 and T-13 (both often diagnosed as incompatible with life) and so many other anomalies that can occur during a pregnancy. No woman goes into a wanted or planned pregnancy thinking "I'm going to terminate this pregnancy if there is something wrong" - but sometimes, it is just kinder to let our children go in peace. In my opinion, there are definitely NOT enough resources available for women who have made this choice - either in person or on-line.

19) What are your thoughts about advocates for DS kids who argue that women are choosing to terminate not because the babies are unhealthy and an enormous burden but because they're uniformed about what raising a child with DS is really like? I think that they want to believe that no one who is informed would choose termination, but the reality is that from my experience as the AHC Administrator, most women ARE informed. We have done our research, weighed our choices on what we can handle, on what our families can handle and what we are willing to let their children go through. Most women know that raising a handicapped child is going to be difficult at best, and we have to base our decisions on information that is relevant to us. Each individual is different. No one can determine for another how much they can handle; that is why making a "heartbreaking choice" is so difficult. No one knows what they will do until they are faced with this decision. You can't say you would never terminate, you just don't know until you get a poor prenatal diagnosis exactly what you would do, then it HAS to be your choice, it has to be the choice that is right for you, your partner and your child. Sometimes, the right choice (for the parents) is letting their child go.

20) Do you think they're painting an accurate picture of the situation? You mean the women who are raising children with Ds? Not in the entirety. The picture that is put forth is that of a healthy, happy child with mental delays. The truth (from my own research and experience) is that many of these children develop health issues as they get older, and many young adults with Ds do NOT grow up to be self-sufficient adults. The adults with Down syndrome you see holding down simple jobs are the exception, not the rule. I don't think anyone can say what is right or wrong for EVERY person faced with a T-21 diagnosis. We each have to make our decisions based on what is right for us, not on what is best for society or for someone else's religious beliefs.