Sweet Austin

Diagnosis: Trisomy 13

By Austin's Mamma

Early in November of 2003 we had found out that we were 10 weeks pregnant...WHAT A WONDERFUL SURPRISE. We had an ultrasound done and at that time everything "looked" to be OK. About 1 month later I started having severe pains and we went to the emergency room at 7 pm in the evening. We did not return home until 4 am the next morning. While in the ER we had an ultrasound done. The tech found a 2 blood vessel umbilical cord and massive cysts on his tiny kidneys. At that point they said don't worry too much just set up an appointment with a Perinatologist and schedule another ultrasound.

We decided to do it after Christmas because we had a 2-year-old daughter and we wanted to make her holidays happy. Well the morning of December 26, 2003 rolled around; we got in the car and went to the hospital, which was about an hour away from our home. We sat in the waiting room for about an hour waiting, since it seemed the family before us had some troubles as well. We finally got in there and we spoke with the genetics counselor; she explained that as young as we were, it was VERY unlikely that anything serious could be wrong. We talked to her about 30 minutes before we went in to the ultrasound room.

I was scared but little did I know my world would soon come crashing down. When the tech started she looked at his umbilical cord, which had 2 blood vessels instead of 3, then she looked at his tiny kidneys, we knew there were already problems there, with massive cysts that pretty much covered the entire kidney. Then she looked at his heart "white spots" they called it; otherwise known as heart defects. She then looked at his spine and his hands; she didn't say much at all.

Then she went to his tiny beautiful face...distorted I could see that plain as day. Our baby boy had a cleft lip and palate. I was devastated at that point I LOST IT! All I could do was cry; I knew this baby had no chance at a "normal" life. We went back to the genetics counselor's office and she explained what she thought it could be and told us what everyone has heard "incompatible with life." She told us, "He would live no longer than two days." We had some difficult decisions to make.

We had planned the D & E for January 4 2004. So on January 2 we went in to have the first set of Laminara inserted. The next day a huge ice storm hit. We had to wait 10 long miserable days to get back to the clinic. When we went back we had to start the Laminara process all over again. It was completely miserable; I had contractions...small ones, they felt like Braxton Hicks. Then that terrifying morning came January 14, 2004. We went to the clinic at 6 AM, by 7:30 the procedure was over. My baby was gone, we never saw him, we never kissed, and we never hugged him. Sometimes I wonder "WHAT IF?"

We had an autopsy done on his tiny body...his tissue and cells showed the rare chromosomal disorder "Trisomy 13, Robertsonian translocation". I am sorry my son. We would rather live with the pain of loosing you than have you go through the pain of being stuck to tubes and life support. I love you our son, someday we will see you again. We know you are now healed and free from pain, but that doesn't take the "missing you" away. We love you sweet Austin.



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Mothers tell their stories...


I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest of my life than to allow her to suffer one moment in life.

~Mom of an Angel

Everything was going great. As already having two "normal" pregnancies under my belt, I felt confident. I knew there was always that chance of hearing bad news but I said "no, not me, not our baby."

We felt that if our daughter had been in a car accident and was on life support with the same internal injuries, we would not keep her on life support and let her suffer. This child deserved the same dignity."

~ A grieving mom

I initially thought I would "be brave" and continue my pregnancy. But I came to realize that ultimately it wasn't about how strong I could be, how deeply I wanted this baby or what important lessons he could teach me. It was about what he would experience in his short life. Given his diagnosis, he would have known only suffering. As his mother, I couldn't allow that to happen.

~ A mother at peace

It was our ignorance for believing that all pregnancies led to a healthy baby. It was my arrogance for believing that since I had the best medical care, took prenatal vitamins even before and during my pregnancy, never took drugs, never smoked cigarettes and drank about half a glass of wine a year, that our baby would be safe.

~A bereaved mother

A mother will stop at nothing, including her own hurt, both mentally and physically, to protect her child.

~Brokenhearted Mother