DrewAnne Lillie

Diagnosis: Trisomy 21

By Ayliea Holl

When I turned 30, my husband and I finished building our home and I went off the pill because we were ready to have children. I have a sister who has been in and out of drug rehab and has two children; they were 3 and 4 1/2 years old at that time. Since I did not get pregnant right away, but was awarded partial custody of her children, I figured God meant for me to be available to help take care of her kids.

Fast-forward ten years: My nephew Brandon came to live with us permanently at age 14, and I still wasn't too upset about not being able to have children. My husband and I had come to terms with the fact that we could not have children of our own. We felt that taking care of my nephew was what we were supposed to do.

I never even knew I had endometriosis until right before Brandon came to live with us. A week after I had my laparoscopy in January 2004, Brandon moved in. Around that time I began going through endometriosis treatment.

Everything was fine until March 2004. I ended up spending 12 hours in the hospital with a burst ovarian cyst. The E.R. doctor was about as sensitive as a post. He actually told me "It's only a small cyst, it shouldn't hurt that bad."

I went to my GYN the very next day to ask her about treatment for the other small cyst they found that had not burst. I also wanted to go ahead with the Lupron treatment she had suggested to completely get rid of the remaining endometriosis. They had found tissue attached to my bowels which they could not get during the surgery. I had initially hesitated because of the side effects of Lupron (it puts you in a menopausal state and can cause hot flashes and mood swings.) After six months of Lupron treatments, two months after my regular cycles returned, I missed my period. I thought it was just the Lupron still screwing up my cycles, but since I was more than a week late I called my General Practicioner. I had been taking antibiotics for a sinus infection, so I asked him if it was safe to be taking the antibiotics if I might be pregnant. He told me to stop taking the antibiotics immediately, and go get a home pregnancy test.

I did both, and my initial reaction to the pregnancy test was disbelief. After ten years of no birth control, no initial symptoms of endometriosis, and no pregnancies, I was shocked. I showed my husband the test results and he said "take another one just to be sure." He couldn't believe it either. I took the second test the next morning, and it was also positive, so I called the doctor to go in and have a blood test done and get some advice.

I did not have morning sickness, and had only a little breast tenderness. After learning that everything should be all right with my pregnancy, I scheduled my first prenatal with the OB/GYN recommended by my GP.

My husband went with me to the first appointment because they were going to do an ultrasound. I was just nine weeks along at the time, but because of my age they wanted to make sure everything looked all right. The baby was so tiny and at that stage only looked like a little tadpole, but we were so excited and happy that after all these years we were going to be parents. We told all our family and of course they were thrilled. My mother-in-law was so joyful; she had wanted us to have children and thought we'd make great parents.

Since up until then we had not been able to conceive naturally, we had convinced ourselves that we did not want children. We felt in-vitro fertilization would be too heartbreaking if it didn't work, and that it was God's will that we were to look after Brandon and his sister.

The first appointment went well. The only cause for concern was that I had just turned 40 and there was an elevated risk of Down syndrome. Our OB/GYN suggested we might want to test, and since I was already at 9 weeks, I could schedule a CVS (Chorionic Villus Sampling) with a perinatologist: the only doctor in our area that offers the CVS.

We scheduled the CVS, never thinking there was anything to worry about. We got there and went through the genetic counseling. Since neither of our families have a history of chromosomal abnormalities, we weren't too worried. The ultrasound went well and we saw our beautiful, perfectly healthy looking baby in 3-D! Unfortunately, my placenta was turned so the doctor could not do the CVS. He said it was like trying to bend a wire around a corner and he couldn't get a sample of the placenta without risk to the baby, so we could not continue. I was a little relieved because I'd read that there was a slightly higher risk of miscarriage with this procedure than there was with amniocenteses, and I had been a little concerned about it.

We scheduled an amnio for March 11, since on the 16th we would be leaving for a trip to Central America where we were in the process of building a vacation home. As things turned out, our insurance would not pay for that doctor to do the amnio since he was not on our "preferred" list. They had approved him for the CVS because he is the only doctor in town who does them. So we canceled all the appointments with him and I tried to schedule an amnio with my regular OB/GYN. Unfortunately, he was not available so his office got me scheduled with another OB/GYN who could do the amnio on the 15th.

My husband couldn't go with me to this appointment since we were leaving the very next evening, so I asked my mother to go with me. She was very excited and sat through another genetic counseling session with me, and we both thought there shouldn't be any problems.

We went in for the ultrasound and there again was my perfect looking little baby. The technician kept taking "slices" of ultrasound. It seemed like she took many "pictures" of the baby's abdomen, heart, neck and brain but she didn't say anything about it. She did say she thought it was a girl, even though I was sure it would be a boy. After about a half hour of ultrasound, she excused herself and told us the doctor would be right in to do the amnio. Strangely, a different technician came in and took over the ultrasound while the doctor did the amnio. The amnio went all right, but it took him two tries to get through the placenta wall into the amnio fluid. Both my mother and I were a little concerned as he did it because we could see on the screen the needle coming close to my baby's little hands, and she had been jumping and moving around a lot.

He finished the test and told me to take bed rest for 24 hours. He said that since I would be flying within that 24-hour period I should not walk around the airports, but have my husband transport me in a wheelchair. The doctor said we should have the results by the time we got back from our trip.

Everything seemed fine while we were in Central America. We got back on March 24th and I took the 25th off with plans to relax and do some baby shopping after we got the amnio results. On the morning of the 25th, I called the doctor's office to get the results. The nurse told me that the initial results were fine and that they did not have all the results back. I was waiting on confirmation of the baby's sex. I wasn't at all sure that the tech who told me it was a girl was correct, since the entire pregnancy I would have sworn the baby was going to be a boy. We even had a boy's name picked out, and then decided that if it was a girl, we would just change the name around from Andrew to DrewAnne.

After a very long wait, the doctor finally called back with the results. He said it was a girl and she had Down syndrome. I was shocked. How could the nurse initially tell me that everything was fine and they were just waiting for the results on the baby's sex to come back? Why would she say that everything was okay, and then have the doctor tell me she had T-21? I asked him if this could be accurate, could it be bad lab results, or maybe someone else's results had been mixed up with mine...it just couldn't be my little baby!

I was so upset I handed the phone to my husband and broke down. It couldn't be right - the baby we had waited 10 years to conceive and wanted so much had Down syndrome. As if that wasn't bad enough, when my husband got off the phone he explained that not only was it T-21, but that the ultrasound showed signs of development problems in her digestive tract and her heart showed signs of congenital heart failure.

The doctor told my husband that if I could even carry the baby to term, that the possibility of her survival was slim; she would need immediate heart surgery and reconstructive surgery on her digestive system. I cried and cried. I called my sister who was in town to give her and my family that lived in town the news. We called our regular GP and our OB/GYN (we had an appointment scheduled with the OB on the 28th) and discussed our options. We also called our insurance company to see if they would cover a termination and where we could have the procedure done; in case that was the route we decided to go. We decided to wait until the appointment on Monday to make the final choice, but checked on making arrangements in case we needed to.

Our insurance provider is affiliated with a Catholic hospital, and due to their policies would not cover a cent of the procedure. I am not Catholic and did not feel they had the right to choose for me, or judge me for my decision. I was very angry and very upset so finally, my husband gave me a tranquilizer and put me to bed. The next day I got online and researched T-21. I found the Web site of a doctor with a child with Down syndrome, which detailed all of the associated complications. I realized that with all the associated complications on top of those that little DrewAnne would already face, we could not let her suffer. I went down and told my husband that it was the only choice I could see making for her. I could not face watching her suffer everyday, if I could carry her to term, if she lived, she would have so many other complications to overcome. It was heartbreaking for both of us. He held me and we both just cried.

On Monday we went in to talk to our regular OB/GYN and discuss the results that had been sent to him from the doctor's office where the amnio was performed. I asked him if there was any possibility the results could be wrong, and he assured me that amnios are 99% accurate.* We discussed having a D&E, I was 18 weeks by then, and we didn't even discuss L&D. My OB/GYN doesn't do mid-trimester terminations, so he referred us back to the doctor who was going to perform the CVS. We figured that since the insurance didn't cover the procedure, that instead of going to the clinic that the diagnosing doctor's office recommended, we would have a doctor we already knew and trusted perform the operation. We had the laminaria scheduled for the next day and the D&E for the day after that - March 29th and 30th, 2005. When I went in for the laminaria, the doctor told me that I was already dilated 3-4 centimeters and that I would probably have miscarried within a week. That made me feel a little better about the choice that we made, but not much.

The evening of the 29th I started contractions. That hurt worse than anything has ever hurt before, not only the physical pain, but also the pain of what I was doing to poor Drew. I prayed and prayed that she did not hurt like I did, that she did not feel that pain. 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. The next day my husband took me to the hospital where the perinatologist met with me briefly before wheeling me into the operating room.

My last thought was that I was never going to get to hold my little girl. I had previously asked the doctor to have the hospital cremate her remains so we could take them to Central America and have a memorial for her there. After the operation, my husband was looking at the chart, and he saw that it said the hospital was just going to give us her remains, not cremate them, so he asked them to take care of her remains for us. He did not think either one of us was up to dealing with a funeral home and having her remains cremated ourselves. I think he was right, but it has made it more difficult to find closure.

This is my way of saying goodbye to Drew and helping to put her to rest. I know she is in heaven with all the other AHC babies and I think of them playing together in God's nursery. I love her and miss her and pray to her every day. I'll never forget that for one brief moment I had a daughter, that I really am a mother!

*Editor's note: The amniocentesis is 99% accurate in finding T-21 (Down syndrome). The one percent inaccuracy relates to missing a T-21 diagnosis, not incorrectly diagnosing T-21 in a chromosomally normal fetus.


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