Liz, Missouri

My story is hard to share but I hope that you will read with an open mind.

As a parent your job is to care for and protect your child.  Every parent-to-be is fearful that they won’t be able to do that for their child.  When I found out I was pregnant, my husband and I were ecstatic.  We had been married for four-and-a-half years and had been trying for about six months to get pregnant.  But like any first time parents we were scared.  All the books tell stories of “what if” and the news rarely has positive stories to share.  Because of these fears, and because I am adopted and have no idea what type of disorders run in my birth family, we decided it was best to have genetic testing.  I was relatively young, 27 at the time, so my doctors weren’t all that worried and scheduled my testing later in my pregnancy.  The testing would tell us if there was a chromosomal defect, like Trisomy 18 (Edwards syndrome) or Trisomy 21 (Down syndrome). It could tell us that there may be neural tube defect such as spina bifida or anencephaly.  To us, the testing was supposed to set us at ease and tell us nothing was wrong, or at the worst it would allow us to prepare and know that I needed to deliver in a hospital with a level IV NICU.  We would make sure our baby had the very best care.

My genetic testing was scheduled for the beginning of August.  My blood was drawn on August 1.  On August 3, as we were driving to a friend’s wedding, my doctor called to tell us the results of the blood work.  She read off a bunch of numbers, most of which I don’t remember, then she told me that my chances of having a child with Trisomy 18,  also known as Edwards Syndrome, had gone from 1 in 3000 to greater than 1 in 10.  I had no idea what this meant for our baby.  I was told that I would be receiving a call from a specialist’s office to arrange an appointment with a genetic counselor and a perinatologist.  I got off the phone confused because just two days earlier I had an ultrasound performed and the technician had said everything looked perfect, and now the words Trisomy 18 and Edward’s Ssndrome was scrolling through my head.

I immediately Googled Trisomy 18 – the results were far worse than anything I could have ever imagined.  I remember reading on the Trisomy 18 Foundation website “Trisomy 18 is usually fatal, with most babies dying before birth, and those who do make it to birth typically living only a few days.  However, a small number of babies (<10%) live at least one year.”  This was followed by a long list of typical defects that are characteristic in Trisomy 18 babies.  I was heartbroken, my husband was devastated, and my family was in shock.

On August 10, when I was 17 weeks 1 day pregnant, we met with the genetic counselor who went over the blood work in great detail and told us what to expect with the perinatologist.  She explained that the perinatologist is an MD, not a technician, and that she would perform a higher resolution ultrasound. It would last at least ½ an hour and she would talk non-stop.  At the end of the ultrasound you could choose to have an amniocentesis but she, the genetic counselor, would not push us in either direction, however, the amnio would be the only way to get a definitive answer.  Moments later the doctor began the ultrasound, “This is a leg, this is an arm, this is the heart,” and then she became silent.  No longer scanning the whole body head to toe, she began looking at certain organs and taking measurements, lots of measurements.  After a bit she slowed down and went back to show us everything she had found–an Atrial Septal Defect (a large hole between the upper chambers of the heart), an unusually small stomach, more than likely caused by esophageal atresia where the esophagus does not connect to the stomach, meaning the baby cannot eat by mouth, and choroid plexus cysts, which are pockets of fluid on the brain that are not problematic, but a marker of Trisomy 18.  She asked us if we had decided whether or not to have an amnio,.  We told her we had, and she said “That is a good choice, I would recommend it”.

After that I went home and waited on bed rest for the longest 48 hours of my life until I got the initial results back.  The genetic counselor called; from her tone I knew it was bad.  I assured her I was at home, sitting, and my husband was on his way home from work.  She told me what I was dreading but by now expecting, “Your baby has Trisomy 18.”  I asked a few questions and she told me that she would help in whatever way she could. I asked her about options and asked again about my baby’s outlook. Her reply was, “I’m sorry but Trisomy 18 is considered incompatible with life.”

My husband and I had already discussed it.   We knew that we could not in good conscience bring a child into this world who would only know pain and suffering.  Most hospitals won’t operate on babies with Trisomy 18, and with the defects our baby had we knew we would be condemning our child to the inside of a hospital for his or her lifetime.  My doctor worked for a Christian hospital that normally does not permit terminations at their facility, but she petitioned the ethics board who, after looking over my baby’s diagnosis and prognosis, deemed that in this case they would allow us to terminate the pregnancy.

My doctor discussed my options with us.  I could undergo a D&E or I could be induced and go through labor and delivery.  I didn’t think I was up for labor and delivery, to go through the physical pain of giving birth just to know that I would lose my much-wanted child.  It seemed like it would wreck me, but after discussing it with my doctor she made it clear that because I was so far along this would be my best option.  She told me that I was young, and that it would be the safer and less damaging to my body if I wanted to have children in the future.  I went along with her because she was my doctor, but at the time, I was devastated.  I couldn’t think about the future.  I didn’t want to think about other children. I wanted this child.  This was my baby, and I loved him or her so much.  My doctor scheduled my termination for a Saturday, when there would be fewer people in the hospital.  It would be quieter, so I could have some peace.

I was admitted on Saturday morning to terminate my much-wanted pregnancy.  All the nurses on duty were told in advance about my condition, and all were kind and sympathetic to the mother who was about to lose her first child.  They began my induction.  My contractions began around noon and lasted until the next morning.  On August 21, at 4:35 am, I delivered an 8.2 ounce baby measuring 8 ¼ inches.  After they cleaned us up, my doctor came over to us and informed us that, as predicted, the baby was stillborn. Then she told us something the ultrasounds hadn’t showed us, that all of the baby’s large joints had been formed incorrectly and “Had he been born alive he would have been born in agony”.

A boy, she said, “He”. The nurse and the doctor both believed it was boy, but weren’t 100% certain. I held him and cried, but it wasn’t until I was leaving the hospital empty-handed that I realized I would never hold my baby again.  To this day, the only thing I regret is not holding my baby longer.  But my very wise and compassionate husband reminds me that  “Forever wouldn’t have been long enough”.

The next day our genetic counselor called to make sure I was doing all right. I told her I was doing as well as could be expected.  She comforted me and told me, “Losing your daughter must have been difficult.”  A daughter?  The amnio had confirmed our baby was a girl.  The list of health problems continued to grow.  Besides having a serious heart defect, digestive issues, and joint malformation, our baby’s external sex organs had also not formed properly.

We named our daughter Rose. It was the name of my baby in a dream I had while in the hospital.  We had her cremated, and this year, to mark what should have been her birthday, we scattered her ashes by the sea.  I love Rose more than anything on the planet; she will always be my first child.  I think about her every day, but I know she is happier and healthier wherever she is than she could have ever been with us.

For me personally, had I been forced to carry my baby, who had been diagnosed with Trisomy 18, to term, I don’t know if I would have survived it.  People can’t help but ask pregnant women questions, and to be reminded everyday by strangers that I was going to have a baby that wouldn’t survive would be devastating.  I realize that sounds dramatic and maybe it is, I probably would have survived in some literal sense, but I would not have remained the person I had always been.  After Rose was delivered I was able to seek counseling, and I was able to start healing physically and emotionally.  If I had to wait until I reached term, it would have been another four months of depression and emotional agony before I could have started to heal.  It also would have taken me far longer to heal physically.

Abortions like mine have another name–a “heartbreaking choice.” The women who seek them have not made the decision lightly.  These are much wanted pregnancies and babies. We make this decision with heavy hearts, but as women we know what is best for ourselves, our families, and most importantly, our babies.

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