The Evan Amendment by Holly
Scheuren
It was 4 years ago and it
still feels like it was yesterday.
Our daughter Maia was 2 years
old and we were halfway through our second pregnancy, I could feel our baby
moving. I had my “20 week ultrasound”
when I was actually 21 weeks pregnant.
We were so excited.
At the ultrasound, the
technician told us that we’re having a baby boy! I thought “A boy? I know nothing about raising a boy!”
The technician joked with us that
he must have his legs tucked up under him.
Then she just got really quiet, finished the ultrasound and led us into
the waiting room. We called our moms to
tell them that we are having a BOY! They
were equally excited.
Minutes later, we were called
back. The nurse practitioner was VERY
serious. I asked if there was something wrong.
And she said “Well, yes. Your baby’s
limbs are measuring in the 5th percentile and you need to have
another ultrasound with another doctor.”
My mind was blank… what do you mean, his limbs are in the 5th
percentile? Is that dwarfism?” I
asked. She said the physician would
answer my questions. She said don’t go
on-line looking for answers, but of course that’s what I did.
I could not be seen for 3
days. In those 3 days I researched what
is meant when a fetus has short limbs… it must be some form of dwarfism. I read how it may be associated with Down’s
syndrome. I was preparing to have a baby with Down’s syndrome or dwarfism. I started researching support groups in Madison . I started thinking about how we would
eventually have to remodel our kitchen to accommodate a person with
dwarfism. I was crying and wondering
what kind of life my boy would have.
Would it be better to have Dwarfism or Down’s syndrome? …
When I called my Dad and told
him that the baby probably has dwarfism.
In his best job to comfort me, he said “well, them are nice people,
too.” (that actually made me laugh).
I knew that both my family
and I were ready for this.
We had no idea.
The 3 days until my
ultrasound were torture. The day of, I was dizzy with anticipation. I tried to
crack jokes but soon, the room was filled only with clicks on the computer. At
one point, they turned the screen to show me my baby! They got a shot of my baby giving the “I love
you” in sign language! He was telling me
he loves me. They printed a picture of my baby. He looked peaceful. He looked normal
After a long wait, the
genetic counselor came in and wrote 2 long words on a piece of paper and turned
it towards us and slowly read out loud “Thanatoporic dysplasia”. “What’s that??? I interrupted.
She said it is a rare form of
dwarfism. “Oh, so our baby will be a
dwarf.” The air was so thick. Pointing at the first word she said “thanatophoric”
means “imminent death”. WHAT?? What do
you mean??? My head was screaming, even though the room was completely silent.
She explained our baby’s long
bones were short. His skull is
strawberry shaped. His jaw is
deformed. His brain has a lot of fluid
in it. If he was born, he would not be
able to breathe because his lungs could not expand in his tiny rib cage. I pleaded “maybe his bone growth will catch
up with the rest of his body!! Maybe he
will just be very small!” She said that
the baby would not survive much past birth.
I felt like I couldn’t breathe. The doctor came back into the room. I showed her the ultrasound picture “But he
looks normal and peaceful!”
They then told us that we
have two options. We can choose to
terminate the pregnancy, or carry the baby to term, and the delivery staff would
be ready with ventilators and pain management until the baby died. My regular doctor happened to be on call that
day; she came into the room and hugged me.
She said she also looked at the ultrasound, and the baby was not going
to live.
We were devastated. What
would we do?? Part of me wanted to give birth to him, just so I could hold
him. But I knew that the image of seeing
him suffer would haunt me for the rest of my life.
We decided we would end the
pregnancy.
When the genetic counselor returned
I told her we decided to terminate, and wanted it done at a hospital. She said that the hospital refers all
abortions procedures to the Planned
Parenthood’s health center where abortions are still available. I did
NOT want to go to a clinic and walk through protesters on one of the worst days
of my life.
The genetic counselor, confirmed no hospital would
perform this abortion, and she would schedule an appointment for me at Planned
Parenthood.
We went to Olin park and just
sat in the car, crying. Calling our
parents, calling my boss. All this time,
I could feel the baby alive moving inside of me. My son.
Alive and inside of me.
Our counselor called with
more had bad news. To comply with Wisconsin ’s 24 hour
waiting period law, I would be too far along to have the procedure at Planned
Parenthood. She said there is a clinic
in Chicago who could see me in a few days.
If they assessed that the baby was too big, then I would have to go to Kansas .
She said the abortion in Chicago is a 3 day
process, so I would need to get a hotel.
Over this time they would slowly dilate my cervix with bamboo reeds and would
do the procedure Friday morning and it would cost $1500 cash.
Now I am calling my Dad to
ask for money. Word of this spread fast at
work and someone took up a collection that raised $200. My Dad gave us $1000 and we came up with the
rest. Our moms bought the hotel room and
came with us, along with our 2 year old daughter Maia.
The clinic was in an
unfamiliar neighborhood and there were tons of protesters with signs about
killing babies. I expected this, but I
didn’t expect them to SHOUT at me.
JESUS!! They have NO CLUE why I am having an abortion. They don’t know what I am going through. I wanted to scream SHUT UP!!
The clinic staff were
friendly but the 70’s decor waiting room had no privacy. I was crying, my mom was holding me, and
people were staring at me. I wanted to
explain to everyone that my baby was going to die.
My name was called and the
nurse did an ultrasound, I finally went to a room that looked like an operating
room, put my feet up in the stirrups and had reeds inserted into my
cervix. OUCH!! It felt like the worst
period cramps ever!
Friday morning, lying on my
hotel bed, my partner and our moms all laid their hands on my belly. We said prayers. We said goodbye. Goodbye baby boy. Goodbye Evan.
On Friday there were even
more protesters. They must know that
this is “abortion day”. They yelled that
a girl just died here last week.
Inside, the staff was friendly
and warm, but I felt like we were cattle, being moved from one room to the
next, just wearing a thin gown. No privacy, no loved ones.
Finally, I went into the
surgery room, was put under anesthesia and I woke up to a nurse calling my name. “Holly... wake up. Holly”
I opened my eyes. I was in a room
with maybe 20 other women all lined up in beds.
I felt like I was dreaming. I
remember looking at the floor and it seemed far, far away. I felt so dizzy. I knew something was wrong the minute I threw
up the ginger ale that I just drank.
The nurses wanted to bring me
back to the recovery room. On the way
there, I felt so dizzy, I fell on the floor with one of them. I peed all over!! The anesthesiologist came
and asked me some questions, gave me a shot to help me wake up. I started having horrible rib pain and I
couldn’t stay awake. I could hear the nurse ask me questions, but I felt like I
was dreaming.
The doctor said there was
nothing unusual about my procedure and would check back with me. I felt so alone. My ribs were killing me. The nurse told me
they would allow me to either bring back my mom or my partner. I chose my mom.
My mom stared into my
face. She held my hand. She told the
nurse that something was very wrong. Then the clinic director came and sat with us.
And while they talked, I kept passing out.
My mom suggested to the
doctor and anesthesiologist it might be pulmonary embolism. The doctor said when he was done he would
call an ambulance and go with us to Northwestern
Hospital . If they called an emergency ambulance, they
would take us to the nearest hospital, which was Catholic and he wanted me to
go to Northwestern.
All the women were recovered
and going home. Except me. Around 5pm, the ambulance came. The EMT lifted me onto the bed. I screamed in pain. WHAT WAS HAPPENING TO ME?
The ride to Northwestern
seemed to take forever.
The emergency room doctor
said he needed to wait for an emergency OB/GYN, who then did a trans-vaginal
ultrasound and told me I would need a cat scan right away. They put a catheter
in me and my urine was brown. My Mom
panicked and thought my organs were shutting down. (my Mom watched WAY too many
ER shows at the time…)
The emergency doctor came
back and said my uterus had been perforated during the abortion and I was
bleeding internally. He said they may
have to take my uterus.
I heard my Mom on the phone
to my dad, crying about what was happening.
The doctor told me that they had to wait for a special team of OB/GYN doctors
and specialized nurses. I waited just
staring into darkness. Hearing the fear
in my Mom’s voice, I just kept thinking about my daughter Maia. Then in walks in the anesthesiologist…
The next thing I remember, I
was in a bed, looking at big Chicago
buildings and it looked like dawn. There
was a man looking at me. I asked him if
I lost my uterus. He said “yes.” I
remember pleading: “Why didn’t they just sew it back up??” I was stunned and cryng.
My partner had to take the moms
and Maia back to Madison . My mom came in to hug and kiss me, and then
they left. I’ve never felt so alone.
The doctor who did the
surgery came in. He held my hand. He told me that I am a very lucky person,
that I lost 2 liters of blood and nearly died.
I was in the hospital for 4
days, including Mother’s Day. My
Mother’s Day was spent looking out at a rainy, cold Chicago ,
again thinking about Maia, who was in Madison
with her Grandma. I had no baby boy, no
uterus, and I nearly lost my life. Maia
almost lost her Mother.
Flash forward a month. The bills start rolling in…surgery room
$17,000…. Anesthesiologist $11,000… Facility charges $75,000…………..
AND….. my insurance denied
EVERYTHING because expenses were related to a non-covered service. My insurance company only covered abortions
if the mother’s life was in danger. Not
if the baby’s life was in danger.
It seemed like I was sobbing
20 hours a day. I didn’t want to talk to
anyone except my mom.
I started going through the
appeals process which kept getting denied.
I was supposed to appeal, in front of the appeals board, made up of
people I work for! I was filled with
anxiety and dread THEN, my insurance case worker called and said someone at my
company went up the chain to the top to plead my case. The person at the top decided that our
insurance company would cover all my expenses at 100% AND that a new policy
would be implemented for all members to cover abortion care for fatal fetal
anomalies!!!! I call this the Evan
Amendment!!
Hallelujah.
A great way to get through my
grief was to bury myself into the world of adoption as I wanted second child.
A year and a half later, my mom
and I flew to Ethiopia
to bring home our beautiful daughter Amara Selamawit.
No family should have to go through
what I went through. Hospitals should be performing later-term abortions. I can’t help but wonder how the outcome would
have been different had I been able to have my abortion done at a safe, modern
hospital.
No one should have to suffer
while trying to do what’s right for their children.
The End.