Each day I got a little better, a little stronger …
By Emme Bea
In the Spring of 2005 I was 36 years old and found myself at a crossroads. The company for which I worked for over 13 years was closing and offered me a large severance package. I found myself with no job for the first time in 20 years. I planned to enjoy the summer, maybe do some traveling, and take my time in looking for another job.
At the time, my husband G and I had been very casually trying to get pregnant for two years. I had polycystic ovarian syndrome (PCOS) and had gone off birth control pills with the hope that we could conceive naturally. Though I knew that my particular condition made it difficult to get pregnant, I didn’t want to allow trying for a baby to become a stressor. I didn’t want to chart, to pee on any sticks, to count days, to take drugs, to have “calendar sex,” or to become “crazy fertility lady.” I had watched my sister go through that in her efforts to have a family and I wanted no part of it. I had been with my husband for 16 years, married for 11, and knew that being child-free was something I could live with. What I thought I couldn’t live with was turning our lives into a medical pressure cooker in an effort to build a family when we were already so happy with our family of two. I wanted a baby to add to our love, not to cause it undue pressure. (That, ladies and gentlemen, is called “foreshadowing” in the biz. Take note, and feel free to laugh at me all you want.)
One week after my last day of work, I conceived our baby. When my period didn’t start on time, I bought a pregnancy test, almost on a lark. I didn’t think I could be pregnant, but I was planning a birthday party for G and wanted to make sure I could have a few drinks. Hot damn and stop the presses! Right there in the little electronic display window was the word “pregnant.” I was pregnant! My body worked! And we did it naturally and without intervention and at a time in my life that really made sense. With me being out of a job, we decided that I would stay home the first couple years of the baby’s life and just enjoy him or her. Wasn’t that what the universe was telling us? Lost job, big severance package, and a new baby? Of course it was! Oh happy day, it was a joyful time.
At my first prenatal appointment, I skipped in and out of the office rubbing my belly. My OB, (let’s call him Dr. Idaho because he later moved there) had blood drawn and I signed a bunch of papers authorizing different tests. We discussed what to expect in the first trimester, and scheduled my first ultrasound. Overall, it was an uneventful visit. Based on my last menstrual cycle, Dr. Idaho estimated that I was six weeks pregnant and said, “See you next month!” You could almost read the thought bubble over my head that read “Tra la la, not a care in the world, life is good, tra la la!” I can still feel that happy, ignorant, naive hope that was propelling me through the early days of that pregnancy.
On Mother’s Day, I sent out an e-mail to all my friends and family and it was titled, “Happy Mother’s Day… to me?” It was meaningful to me to make that announcement on Mother’s Day as it was the second Mother’s Day without my own mother who had passed the previous year from lung cancer. I felt she was looking down on us and smiling.
Fast forward to my second prenatal visit, and if this were a movie, you’d hear the big scratch of the needle on the vinyl record of my happy tra la la music. Screeeech went my happy song as Dr. Idaho went over my chart and said, “Oh, by the way, your blood work came back positive for being a carrier for cystic fibrosis.” He said it so casually, so nonchalantly and with absolutely no concern. Apparently one of the papers I signed at my first prenatal appointment authorized a blood test to screen for the cystic fibrosis (CF) gene. I didn’t realize this as I was too busy skipping and singing and picking out nursery colors and baby names to be concerned with what papers I had signed. Not that I wouldn’t have signed them, but I wasn’t focusing on what those papers meant. Dr. Idaho went on to allay my fears and lay out what being a carrier of CF meant. The fact that I alone was a carrier meant nothing really. But we would need to have my husband, G, tested for carrier status. Then we might have to worry. Dr. Idaho mentioned that in the five years he had been testing for CF, he never had a patient’s partner also test positive, so we shouldn’t worry? Easier said than done. I left his office on lead feet and went home to confer with Dr. Google.
What I learned online was that we were about to enter a game of chance and the odds were in our favor. First, one out of every 20 Caucasian Americans of eastern European descent carry the recessive gene that causes CF. The chance of two carriers hooking up and procreating is one in 800. I liked those odds. I focused on those odds. I didn’t want to think that G’s chances were one in 20; I wanted to focus on the lower odds of the both of us being positive. If your partner also is a carrier, then the odds get a little scarier. Any baby conceived by two carriers of CF has a 50 percent chance of being a carrier, a 25 percent chance of not even having the CF gene, and a 25 percent chance of having both recessive genes and being affected with cystic fibrosis.
G went and had blood drawn for the test and I settled in to learn as much about CF as I possibly could. I was ten weeks pregnant and already the happy, skippy days of my pregnancy were officially over. Treatment for cystic fibrosis has come a long way in the last 20 years. Life expectancy has almost tripled and many patients can live into their twenties and thirties. However, it remains 100 percent fatal, there is no cure for it, and there is no way to predict how severely the disease may manifest itself. Cystic fibrosis affects the exocrine (mucus) glands of the lungs, liver, pancreas, and intestines, causing progressive disability due to multi-system failure. Thick mucus production, as well as a compromised immune system results in frequent lung infections, including repeated cases of pneumonia. Children with CF go through daily physical therapy treatments to clear their lungs, are often hospitalized due to the constant threat of lung infections, may have to have bowel surgery right after birth, are often home schooled to reduce the threat of illness, and are unnaturally aware of their own mortality. CF is painful, incurable, and cruel. And my baby may have it.
A week went by and we still didn’t have the results of G’s blood test. After some frustrating telephone calls, we learned that the lab had lost his sample and they would need to pull another sample to be tested. I was now 11 weeks pregnant and waiting for the news that my husband wasn’t a carrier. Tick tock went the clock. The calendar pages slowly tore away and I entered week 12. G’s results finally came back…he was also a carrier of CF.
Dr. Idaho had me make an appointment with a perinatologist to schedule an amniocentesis. I was so ignorant about prenatal testing that I didn’t even know what a perinatologist was. In making the appointment, I was told I needed to meet with a genetic counselor prior to the amniocentesis. I was 13 weeks pregnant when we sat down and spoke to the genetic counselor to discuss our testing options. We discussed cystic fibrosis, the different mutations, and our results. I quickly learned that I knew more about CF than the well-meaning and sweet genetic counselor. What I didn’t know then, but she told me, was that I had just missed the gestational window of opportunity to have a prenatal test called chorionic villus sampling (CVS) that could test for CF weeks before an amniocentesis is even possible.
CVS is similar to an amniocentesis in that a needle is inserted into the uterus to retrieve genetic material to test. However, in a CVS, placental material is removed, not amniotic fluid. A CVS is typically scheduled between 10 to 12 weeks gestation. If you miss that window of testing, you must wait for an amniocentesis, which is generally scheduled no earlier than 16 weeks gestation. Though slightly riskier, a CVS will give you earlier results. When testing for cystic fibrosis, CVS results can be back as soon as 10 days after the test, but for an amniocentesis it usually takes four to five weeks for results.
The time it takes to get cystic fibrosis results back is actually much longer than if testing for aneuploidies or for sex chromosome abnormalities. If testing for aneuploidies (an abnormal number of chromosomes, such as in Down syndrome) a simple count of the chromosomes is all that is done, and results can often take as little as three days. With cystic fibrosis however, there is no speeding up of the process as they must grow the culture in a lab until the sample is large enough to test the seventh chromosome to determine the genetic makeup. CVS results can come back much sooner than amniocentesis results because the genetic material retrieved from the placenta in a CVS is more concentrated than the genetic material present in the amniotic fluid retrieved from an amniocentesis, therefore you don’t have to grow it as long before testing.
Due to the lab’s snafu in losing G’s blood sample, we just missed our opportunity to know as early as 13 weeks whether or not our baby had a fatal disease and would now have to wait for almost two more months to know the status.
At 16 weeks I had my amniocentesis. The ultrasound technician who did the preceding scan was, I believe, clearly aware of our situation and clearly biased against terminating. She wasn’t exactly subtle in letting us know this. Before the scan, I had to sign a paper stating that I was counseled about my options to terminate the pregnancy. (I was not.) I asked the technician about this clause and she said, “Twenty-four weeks; now you’ve been counseled.” I said, “Twenty-four weeks? For what?” She said, “You can legally abort your baby in this state up to 24 weeks. That’s what I’m supposed to tell you.” That was the only counseling I received on termination. G and I knew it was an option. G was sure that he didn’t want to put a child through a life of illness but I wasn’t sure of anything. I knew I didn’t want my child to suffer, but I was not ready to make any real decision before I had to.
During the ultrasound, we learned our baby was a boy. It was bittersweet seeing that perfectly forming little baby mugging for the camera and knowing that he may be fatally ill. The technician kept saying things like, “What a cutie. What a blessing. What a gorgeous child.” On the two ultrasound pictures she printed out, they both have the phrase, “What a cutie!” printed over the image. The only photos I have of my son are printed with her propaganda. I get sick thinking about it. As I lay on that table watching those images, tears silently rolled from my eyes and into my ears. I had puddles of tears in my ears and a heart that was growing for this child even as it was breaking with the possibilities of what might lie ahead. The amniocentesis itself was uneventful, relatively pain free and quick. We left the office and went home to await our fate.
How was I going to get through this time? How would I survive? I wanted so badly to enjoy the pregnancy. I was in love with my baby already. I had seen him move on the ultrasound. I watched my belly grow. Despite wanting to distance ourselves, we found it impossible not to begin making plans, even as we knew we had a 25 percent chance that those plans would be ruined. I wouldn’t buy maternity clothes or anything for the baby, but I couldn’t stop myself from hoping.
I was hiding all this from my family and most of my friends. I could see their curious looks when I couldn’t muster up the enthusiasm they thought I should have in the glow of my second trimester. My mother had passed away the previous year and I didn’t want to put my father through further worry, he was still fragile after her death. I was being strong for me, for my family, for my husband and for my baby. I kept going over and over the odds in my head. My baby had a 75 percent chance of being healthy. Still, it was hard not to focus on the one-in-four chance that he may be sick.
Because the percentages were still in our favor, I had convinced myself that even if he were sick, we would continue with the pregnancy. I had to tell myself that in order to keep going. We picked out a name; Christopher, and against our better judgment, began to say things like, “After we find out he’s okay we’ll set up the nursery, pick a registry, etc.” I would rub my belly and talk to Christopher and beg him to be healthy.The weeks between that first glimmer of something possibly being wrong to the call from my genetic counselor dragged by in a slow, excruciating haze.
On a Friday morning, four and a half weeks after my amniocentesis, the phone rang. G had just gone in to take a shower so I was alone when I listened to the genetic counselor on the other end saying “I’m so sorry but….” After the obligatory discussions on the chances of the test being wrong (no chance), I curled up in a fetal position and began to cry, holding my belly, holding my baby, my son. I knew that second that I couldn’t put this child I loved so much through a life of pain, sickness, hospitalizations, surgeries, procedures, and isolation. I knew I would let him go. G came out of the shower, saw me crying and just knew. He lay down next to me, spooning me and joining in mourning for our son that was still with us.
I made a call to my OB, but he was out of the office. I left a message for him to call me back. I made a series of other phone calls while I waited to hear from him. I called a friend of mine that had lost a baby girl due to a heart condition after fighting for almost a year. I told her of my situation and asked her what it was like to have a terminally ill child and watch it die. She told me unequivocally that if she had the chance to end her daughter’s suffering prenatally she would have done so. I called a former coworker with whom I had kept in sporadic contact with since we last worked together. I knew he lost a son to cystic fibrosis and I wanted to speak to him. His son was three years old when he died. He understood why I would consider termination and he offered me support without judgment regardless of what we chose to do. I then called my mother-in-law. She was the one family member we told while we were waiting for results and she gave me the strength I needed during that long summer. She felt very strongly that the best thing to do for our child and our marriage was to let our son go. She was an anchor my husband and I held onto during those stormy days.
I then called Planned Parenthood, who recommended a local clinic that would support a late second trimester termination. I called them and made an appointment for the following Tuesday. I would be almost 21 weeks pregnant by then. They told me that at that gestational age, they only performed labor and delivery (L&D) terminations. I did not want an L&D, but felt I had no choice. I couldn’t imagine laboring for hours to deliver a baby that was not meant for this world. I was heartbroken and unable to further research my options regarding location and type of termination.
In the next five days I settled into a fog of sadness and tears. I was feeling my baby move and each kick was a virtual stab in my gut. I threw out my prenatal vitamins and the two maternity shirts I had bought. I hid my What to Expect When You’re Expecting book. It was no help to me now. I needed a “What to Expect When You’re Going to Terminate a Pregnancy You Wanted So Badly” book. I spoke with my dad and my friends, and sent an e-mail to my siblings explaining what we were going through and asking them to not call me for a while. I didn’t want to talk to anyone except my dad and my mother-in-law. I made them my spokespersons and made everyone talk to them if they wanted to find out about me or pass me a message.
Tuesday morning rolled around. I now feel like I have total recall of every moment of that day. We went to the clinic and it was not what I was expecting. It had a large waiting area that was packed to overflowing. Each chair was occupied. I was given a clipboard with paperwork to fill out. I stood while I filled out the paperwork and looked around. The waiting room was populated with young girls there with their friends or family, and there was a strange air of disconnect—like we were all waiting to get our teeth cleaned.
A large television on in the waiting room blared a old rerun of Family Feud. After each un-guessed answer was revealed, the people in the waiting room would repeat it:
“Name a food that would make you gain weight if you eat too much of it.”
“Haaammmburrrgggerrrr” or “Iiiccce crrreeeeaaammm,” they’d say in unison.
The floor was scratched linoleum, the chairs were mismatched plastic. The vertical blinds were broken and missing and none of us were allowed to bring purses or bags for fear of protesters bringing in contraband or worse. So there we all were, with our IDs in our pockets and our eyes glued to Family Feud.
It was at that moment when I heard a voice in my head, as clearly as I heard the people on television. It said, “Your son deserves better than this.” I turned to my husband and said, “I need to get out of here.” Without another word we put the unfinished paperwork on the counter and walked out.
I went home and called my OB. he gave me the name of a doctor who performs late term terminations for medical reasons in the quiet solace of his office. I called that doctor’s office and told them my situation. They told me to come in immediately. While I was on the way, they had my OB fax over my paperwork. When I arrived, I found a regular OB/GYN practice with two clean, open waiting areas. One area was for the happily pregnant clients of the doctor, and the other room had a separate entrance and was for those women, like me, that had chosen to end their pregnancies.
I went in to see the doctor, who I’ll call Dr. B. He had a technician perform an ultrasound on me to determine the age of the fetus and then had me wait my “turn.” This place was quiet. I could tell that the doctor and his staff believed very strongly that the women who came to them deserved respect and compassion.
The doctor was kind and gentle and understanding. Also, he only did dilation and evacuation (D&E) terminations, saving me my fear of labor and delivery. He explained the procedure to me and asked if I had any questions. I broke down when I asked if my baby would feel anything. No, I would be under twilight sedation and the baby would be immediately sedated even before I felt the effects of the anesthesia. It would be a two-day procedure: laminaria to open the cervix on the first day and the actual procedure on the second day. After the exam and discussion, I was sent to wait in the waiting room until it was time for the laminaria insertion.
As I waited, I noticed a television was on in the waiting room. It was showing an old episode of Yes, Dear where the main fictional character was pregnant and was being filmed for the show A Baby Story. Are you kidding me? Seriously? G had someone change the channel, but not before I had to see happy grandparents and happy parents and a happy birth. Yeah, thanks, that was nice.
Next, as we continued what seemed like a decade of waiting, G read over the lab results we brought with us and noticed something that made him question the accuracy of the test. It listed my DNA sample in two places and assigned that sample a number. He noticed the number was different in two places. He thought, “Oh my god, what if they tested the wrong sample? What if our baby isn’t affected?” Get on your roller coaster, we’re going for another ride.
We had Dr. B call Dr. Idaho who in turn called the lab that did the testing. After 45 minutes which felt like a lifetime, the answer came back; the sample numbers we saw were blind numbers used to ensure that the tests were accurate, and they tested two samples to ensure that the results were the same each time. So yes, indeed, the results were not only accurate, they were double tested and checked. I can’t even begin to explain what it was like to sit and wait to hear those words. I’m very glad that every avenue was checked and I would not have been able to continue if I wasn’t sure, but my heart was ground into a pulp to think that there may have been a reprieve and then learn that there was indeed no hope.
After that, there was no more waiting. While the laminaria was inserted I cried and cried. I heard one nurse whisper to another, “cystic fibrosis.” Then that nurse came and held my hand and stroked my shoulder and hair while they continued with the insertion. They had to stop periodically as my uncontrollable sobs were making my muscles tense up very badly.
Finally it was over. I got dressed and walked like a zombie out to the waiting room and into the arms of my husband. As G and I were going down in the elevator I let out a primal scream. I screamed for my son who was going to be gone the next day and for the life he should have had if he were healthy. I cried all the way home. Truthfully, what I refer to as “Laminaria Day” was worse than the actual procedure the following day. Not because of the pain, but because I had begun something that I couldn’t stop. I couldn’t fool myself that I would change my mind at the last minute.
Even so, I knew that what I was doing was the right thing for my son. I was giving him a life of love and comfort and not allowing him a single moment of pain and suffering. It was the hardest thing I had ever done, but it was also the surest thing I had ever done. No one goes into that room undecided and if they say they are, they are kidding themselves. I don’t believe that anyone ends a pregnancy if they are not 110 percent sure that what they are doing is right and good. However, knowing that and doing so with a light heart are two different things. My heart was heavy, my soul was bruised, and my spirit was broken. But my son would never know pain or fear, and that is why we did it.
The following day we returned for the actual termination and, as I mentioned, it was not as bad as the previous day. When I awoke from the sedation, the nurse who had assisted in the laminaria insertion was sitting with me, holding my arm. She administered to me and, after some time, I was ready to go home. Home to heal, home to lick my wounds, and home to try to figure out how to go on.
The next week I never left my home. I would take long showers two and three times a day so I could cry unfettered without worrying if I would upset G. It felt like I was in the middle of some kind of weird grief hangover. I dreamed I was still pregnant and could feel my son moving. I have vivid memories of this time. Little vignettes that continue, even now, to play through my mind. I remember seeing G mowing our front yard through the window and stopping to speak to our next-door neighbor. I watched the pantomime of the neighbor smiling and asking how I was doing and then seeing her face fall as he told her we “lost” the baby. I remember answering the doorbell and finding another pair of neighbors smiling and holding a bouquet of flowers. They had just heard I was pregnant and were bringing me a congratulatory card and flowers. I was momentarily confused. I didn’t know how to be gracious and informative at the same time. “Thanks, but I ‘lost’ the baby.” They gave me the flowers and the card anyway. My belly was empty but I had a congratulations card celebrating a new life.
I remember preparing for Hurricane Katrina. We live in south Florida and she was heading our way less than two weeks after the termination. G was working and I had to summon up the strength to leave the house to get hurricane supplies. It was the first time I ventured out. I remember being in Home Depot, with my breasts leaking milk for a baby who was gone, and crying on the cell phone to my dad, sobbing, “But I can’t find the damn thing!” Whatever it was I was looking for was either not where it should have been or not where my clouded eyes could find it. I don’t know why I thought my dad, who lived five hours away, could help.
I remember going to dinner on my birthday and drinking wine. I hadn’t had wine in five months. I didn’t want wine, I wanted a healthy baby. I was measuring my life in terms of before the termination and after; of when I was pregnant and when I was not. I wanted to be normal. I wanted to not grieve. I wanted the pain and hurt to stop. I wanted to be whole again and I didn’t know how to make that happen.
I searched for relief on my computer. (When all else fails, Google to the rescue!) I found an online support group for women like me that was like a light at the end of the tunnel. I had thought I was alone, but I was not. There were women out there just like me that were going through this journey. Those women offered me hope and friendship and understanding in a way my family and friends could not. I will be forever grateful for those women and the strength they were able to help me find in myself.
For a short while, I truly thought I would go insane from the grief, but I did not. Each day I got a bit better, a bit stronger. I found I could still laugh. I could still smile. I could still hope.
During the summer, while I was getting my degree in genetics from the University of Google, I learned of a way to have a baby that would practically ensure a healthy CF-free outcome. I learned of a procedure called preimplantation genetic diagnosis (PGD) which is done hand in hand with in vitro fertilization. I filed this information away in the back of my head and discarded it as being too expensive and too risky. I wasn’t prepared emotionally or physically to even think about it. But one night after our termination, while lying with my husband in bed, he whispered to me, “You know, I’ve read about this thing called PGD….” Prior to that, I had no idea that he even knew about it or even cared to research it. I was wrong. He was hurting as much as I was and was pained to see me so devastated. He wanted a way to make me happy, to offer me hope, to fix in his own way what was broken. That one little sentence showed me how much he loved me, and how far he was willing to go to bring joy back to his wife.
I began to look into PGD in earnest. Basically, a woman goes through a regular IVF cycle, but before the embryos are transferred into her uterus, a single cell is removed from each one and is tested to ensure it isn’t affected with the disease you’re testing for; in my case we tested for cystic fibrosis. After the tests are done, only healthy embryos are transferred and if you’re very lucky, one (or more) implants and you have a normal pregnancy after that point.
Shortly after my son’s diagnosis I had pretty much decided we would be childfree. I knew that I could not go through another termination and I couldn’t bear the thought of conceiving naturally now that I had the knowledge of what was at stake. After learning about PGD I began thinking about trying for a baby again, and it felt strange.
I found a reproductive endocrinologist with PGD experience and met him for a consult. I was actually hoping he would talk me out of it. But I left there thinking that it was something we could do. Hey, I still had that fat severance package just itching to be blown on something, why not use it trying for hope? I did a lot of soul-searching and ultimately decided that I needed to honor my son’s memory by taking the chance to have a healthy baby. We went through too much to give up.
Here’s where that foreshadowing comes in. Remember when I said I didn’t want to be that woman who went crazy with the fertility treatments? Well, in order to ensure a healthy baby, that’s what I became. With IVF, you jump in with both feet and go hog wild with syringes and drugs and calendars and hope. I went from a casual “let’s just see what happens” kind of conception ideology to a crazy syringe-wielding, self-injecting IVF veteran.
I found myself back in a world of fighting percentages. There was a less than 40 percent chance of becoming pregnant, but even before you get to the point where healthy embryos are transferred, you have to pay your money and take your chances. Who knew I’d become a gambler? I had already lost so much counting on even better odds than that, why was I trying? Because I had to. I had to give my body the chance to carry a healthy baby.
So what gave me the strength to go on and how did I know it would lead me first through despair and then to a happy ending? I didn’t know, and I don’t know where I got the courage to try. I gathered strength from my family, from my friends, and a great deal from the women I came to know in my online support group. But the truth is, I think I needed to try. I needed to feel like I was actively participating in my own healing. I needed to fight for my happiness and fight to control my own destiny. I wanted to be able to say “I made this good thing happen” instead of “this bad thing happened to me.” I wanted to be more than the sum of my grief and sadness. I wanted to be happy again and I wanted to believe that I deserved a happy ending.
This story does have a happy ending. We went for it, and after our first IVF cycle we learned we were indeed pregnant with a healthy baby boy. Our healthy son was born in November 2006. I often think of him as a gift that was given to us by the brother who came before him, for if it weren’t for our first son, Christopher, we would not have the unbridled joy of being Justin’s parents today. There’s not a day that passes that I don’t think of the son I let go, even as I hold and love the one I fought so hard to make. I would never ever want to go back to relive those dark days of the summer of 2005, but I will be forever grateful for the destination to which that rocky road brought me.
©Christie Z. Brooks. Story reprinted from Our Heartbreaking Choices with permission.