When I was 30 years old, I went off the birth control pill. My husband and I had recently finished building our home, and we were ready to have children. I had a sister who had been in and out of drug rehab and had two children of her own; Emily was three years old and Brandon was four and a half years old at that time. I was awarded partial custody of her children and since I did not get pregnant right away, I figured that God meant for me to be available to help take care of her kids.
Fast-forward 10 years: My nephew Brandon came to live with us permanently at age 14. Although I still had not been able to conceive I wasn’t very upset about it. My husband and I had come to terms with the fact that maybe 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 permanently. I had a laparoscopy done in January 2004, and Brandon moved in one week later. Shortly thereafter I began going through endometriosis treatment.
Everything was fine until March 2004, when I ended up spending 12 hours in the hospital with a burst ovarian cyst. The ER 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 gynecologist the very next day to ask her about treatment for another small cyst they found on the same ovary that had not yet burst. She suggested that I go on Lupron treatment; it would help to clear up the cyst and also completely get rid of the remaining endometriosis. During my earlier surgery she had found tissue attached to my bowels that she could not remove for fear of rupturing my intestines. I had initially hesitated going on Lupron because of the negative side effects of it—it puts you in a menopausal state and can cause hot flashes and mood swings. I eventually agreed to the Lupron treatment. I completed six months of treatment and my regular monthly cycle returned two months after my last shot was administered. I had regular periods for the next two months, and in the third month I missed my period. I assumed it was the effects of the Lupron messing up my cycles. To be safe and because I had been on antibiotics for a sinus infection, I called my general practitioner and asked him if I should be taking antibiotics if there was a possibility I might be pregnant. He told me to stop taking the antibiotics immediately, and to take a home pregnancy test. I did both.
My initial reaction to the positive pregnancy test was disbelief. After 10 years of no birth control, no initial symptoms of endometriosis, and no pregnancies, I was shocked. I showed my husband the pregnancy test results, and he said, “Take another one just to be sure.” He couldn’t believe it either. I took the second pregnancy test the next morning, and it was also positive! I called the doctor to go in and have a blood test done and to get some advice. I did not have morning sickness, and had only a little breast tenderness. After learning from the doctor that everything should be all right with my pregnancy, I scheduled my first prenatal check-up with the OB/GYN recommended by my general practitioner.
My husband went with me to the first appointment because the doctor was 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 those years we were going to be parents. We told all our family, and of course they were thrilled. My mother-in-law Lillie, for whom our daughter would be named, was so joyful; she had wanted us to have children for so long and thought we’d make great parents.
The first doctor’s appointment went well. The only cause for concern was that I had just turned 40 years old and there was an elevated risk of the baby having Down syndrome. Our OB/GYN suggested we might want to have a prenatal test, and since I was already at nine weeks, I could schedule a chorionic villus sampling (CVS) with a perinatologist. There was only one doctor in our area who performed the CVS.
We scheduled the CVS, never thinking there was anything to worry about. We arrived for our appointment and went through the genetic counseling. Since neither of our families had 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 CVS than there was with amniocentesis, and I had some concern about it.
We scheduled an amniocentesis for March 11, 2005, since on March 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 amniocentesis since he was not on our “preferred providers” list. They had only approved him for the CVS because he was the one doctor in the area who did CVS’s. So we cancelled all the appointments with him, and I tried to schedule an amniocentesis with my regular OB/GYN. Unfortunately, he was not available, so his office got me scheduled with another OB/GYN who could do the amniocentesis on March 15th, the day before we left for vacation.
My husband couldn’t go with me to the amniocentesis 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. We both thought there shouldn’t be any problems.
We went in for the ultrasound, and there again was my perfect looking baby. The technician kept taking “slices” of ultrasound images, but she didn’t say anything about them. She did say she thought the baby was a girl, even though I was sure it would be a boy. After about a half-hour of scanning, she excused herself and told us the doctor would be right in to do the amniocentesis. Strangely, a different technician came in and took over the ultrasound while the doctor did the amniocentesis. The amniocentesis went alright, but it took the doctor two tries to get through the placental wall into the amniotic fluid. Both my mother and I were a little concerned as he did the procedure because we could see on the screen the needle coming close to my baby’s little hands; the baby had been moving around a lot and we were afraid the doctor might hit her with the needle.
He finished the amniocentesis and told me to take bed rest for 24 hours. He said that, since I would be flying to Central America within that 24 hour period, I should not walk around the airports, but my husband should transport me in a wheelchair. The doctor told me that we should have the results of the test 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 took the 25th off from work with plans to relax and do some baby shopping after we got the amniocentesis 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 but that they did not have all the results back yet. She said that they were waiting on confirmation of the baby’s sex. I wasn’t at all sure that the technician who told me it was a girl was correct, since the entire pregnancy I could 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 name her after her grandmother “Lillie.”
After a very long wait, the doctor finally called back with the results. He said the baby was a girl and that she had Down syndrome. I was shocked. How could the nurse 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 my daughter had trisomy 21? I asked the doctor if it could be accurate—if it could be bad lab results, or maybe someone else’s results had been mixed up with my own. It just couldn’t be my little girl!
I was so upset that 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 to me that not only was it trisomy 21, but that the ultrasound showed signs of developmental problems in her digestive tract and her heart showed signs of congenital heart failure.
The doctor told my husband that if I was able to carry the baby to term 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 the rest of my family the news. We called our general practitioner and our OB/GYN (we had an appointment scheduled with the OB/GYN a few days later), and discussed our options. We also called our insurance company to see if they would cover a termination, and to find out where we could have the procedure done in case that was the route we decided to go. We decided to wait until the appointment to make the final decision, but we checked on making arrangements in case we needed to.
After speaking with our regular OB/GYN at the appointment and consulting with the doctor who originally was going to perform our CVS (who was the doctor who would be performing the termination) we went ahead and scheduled the termination. We were told by all three doctors that the prognosis was not good, and that even if Lillie did make it to term (which was unlikely in their opinions) she would need immediate heart and digestive surgery, not to mention that she would be mentally disabled.
On March 29, 2005 I went in for the laminaria insertion to begin the process of opening my cervix. The procedure itself was not very painful for me—it was like having a pap smear. But that night when the contractions started, it was agonizing. The doctor gave me a pain killer, but it couldn’t take away the emotional pain of my impending loss. I cried very hard as I lay there with the most severe cramps I have ever had in my life.
The next day I went in to the hospital to have the dilation and evacuation (D&E) and was treated kindly, but wasn’t given a lot of information. I initially told the doctor that I wanted my daughter’s remains, thinking that the hospital would have them cremated for me. We learned that the hospital would just release her remains to us—not cremate them. My husband did not think either of us was up to taking care of her remains ourselves, so we had the hospital bury her with the other lost babies.
After struggling with our loss of Lillie, we decided to try again. My pregnancy with her made me believe that I could bear children after all. We tried for three months on our own, from May to August of 2005. In August I sought out my reproductive endocrinologist (RE) to ask if there were any tests that could be done to help us conceive. I was tested for follicle stimulating hormone (FSH), thyroid, and luteinizing hormone (LH) levels and I had a hysterosalpingogram (HSG) test, which all came back normal. The doctor then put me on Clomid to induce ovulation. I was on Clomid for three months, to no avail. I then went on a mixture of Clomid/Bravelle for three months and did an intrauterine insemination (IUI). Still no luck, and I was 41 years old. After talking again to my RE in December 2005, he put me back on the Lupron treatment for three months. After coming off the second Lupron treatment, we tried to conceive for another three months. In July 2006 I became very depressed and sought counseling.
I then turned to the Nevada Center for Reproductive Medicine. After my initial consultation in August 2006, my husband and I went ahead with the testing for my FSH again. Since I was 41, they needed to check to see if my eggs were good. Since my FSH came back at 8.0 and was within low enough levels to use my own eggs, we went ahead with the cycle. We were lucky to retrieve 22 eggs; 17 were mature and 11 were fertilized using intracytoplasmic sperm injection (ICSI). Out of the 11 fertilized eggs, eight made it to day three for preimplantation genetic diagnosis (PGD). We had already decided we would do the PGD, since my chances of having another trisomy 21 baby at age 41 were quite high. Out of the eight that made it to PGD, seven of the eight were chromosomally abnormal! We discovered that although my ovaries stimulated well, my eggs were old. We then looked into donor eggs. After some trepidation and a lot of discussion, we went ahead with a donor egg cycle.
Our donor produced 60 eggs, but only approximately half of them were mature. After fertilization (we did natural fertilization that time since we used a donor) only 11 eggs were fertilized and made it to PGD stage. We were adamant about doing PGD even though we were using a donor, because after you go through losing a child to trisomy 21 or any other anomaly, you focus more on having a healthy baby versus the financial cost of PGD. So we had 11 embryos, of which only six were chromosomally normal. That was when we found out that my husband had chromosomal issues too.
We transferred two embryos and within a week I knew I was pregnant! I was so happy! The cost for both cycles came to over $40,000, but to finally be pregnant with two baby boys that we knew were chromosomally normal was worth it! Unfortunately, I lost the pregnancy at five weeks. It ended up being a chemical pregnancy whereby the fertilized eggs never implanted in my uterus properly. I was devastated. We were lucky enough to have two other embryos to freeze, but have since found out that I have immunology issues as well.
We did some fairly extensive testing after the loss of my boys and found that I have a methylenetetrahydrofolate reductase (MTHFR) deficiency, and also have no protection from anti-paternal cytotoxic antibodies. Simply put, I don’t metabolize vitamins B6, B12 or folic acid correctly, and my body’s own immune system attacks any embryo as if it were a foreign object. My pregnancy with my daughter truly was a miracle! In order to carry a pregnancy, I would have to take mega-doses of vitamins B6, B12 and folic acid, and I would have to go through immunological treatment involving injections with my husband’s white blood cells to try to get my body to “accept” his cells.
During the first month of the immunological treatment, my arms swelled up and bruised easily; it took almost four weeks for the injection sites to heal. The next month, only four days after the second treatment, my arms were only very slightly bruised and started to heal very quickly. I was tested in April 2007 to see if the injections had had any effect on my immune system; they hadn’t. We decided to move forward with the frozen embryo transfer (FET) though, because I felt that the real reason behind my loss must have been the MTHFR disorder. I remembered that I had been taking high doses of B6 and B12 when I conceived Lillie. I had been working long days and was under a tight deadline, so I was taking those vitamins to help with stress, never realizing that it would help me carry a pregnancy.
We went through the FET process in June 2007, and, unfortunately, it failed. I was heartbroken. Even three years after letting Lillie go, I still have moments of extreme sadness. I still struggle with the loss of Lillie and with the loss of possibly never being able to have children. So here I am, more than three years later, without children and without the hope of having any naturally. While my story has come to a close for having children, going through terminating a much wanted pregnancy, the subsequent infertility, and miscarriage has taught me a lot about myself.
One thing I have learned is that I am stronger than I ever thought I would have to be. I have learned to try to be content with who I am and what I have become. I hope that through my experiences I can help others to cope with their losses. Whether it is the loss of a much-wanted child through termination for medical reasons, or the loss of fertility, or of a subsequent pregnancy, I have been there and I know how painful it is. I now administer to the private discussion forum for A Heartbreaking Choice on the web site at aheartbreakingchoice.com.
I also know the joy of life. The many losses have taught me to never take life for granted. Life is precious, but so is quality of life. We who are so humane to our pets are judged for being humane for our children. Isn’t that what makes us good parents? We have the ability to know that instead of giving our children a life of suffering, we have given them an eternity of peace.
* Story reprinted, with permission, from “Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy.”