Testimony from Elizabeth
My name is
Liz Read Katz and I am from Columbia, Missouri.
My story is
hard to share but I hope that you will listen 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 but scared as most soon to be parents
are. 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. 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 wanted to make sure our baby had the very
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 had an
ultrasound that the technician had called perfect, and now Trisomy 18 and
Edward’s Syndrome 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
Foundations 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
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 that 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.”
and I had already discussed it. We knew
that we could not in good consciences bring a child into this world that 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 that, after looking over my baby’s
diagnosis and prognosis, deemed that in this case they would allow her to
terminate the pregnancy.
admitted on a Saturday morning and had the procedure before sunrise the next
day. After, our doctor 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
A boy, she
said, he. I asked, 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.
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, 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 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.
I decided to
come share my story, Rose’s story, to ask Missouri Legislators to consider the
negative effect these bills will have on so many women’s lives. For me personally, after my husband and I had
made this heartbreaking decision, I can’t imagine what it would have meant to
be forced to wait three more agonizing days for the procedure.
proposed would place government in the middle of decisions better left to a
woman, her family, her faith, and her doctor. The women who seek abortions have
not made the decision lightly. Many of us make this decision with heavy hearts,
but as women we know what is best for ourselves, our families, and most
importantly our babies. Please do not
take this choice away from us. Thank you
for your time.