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
. 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? … Madison
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
’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 Wisconsin . Kansas
She said the abortion in
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. Chicago
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
. 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. 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
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. Chicago
My partner had to take the moms and Maia back to
. My mom came in to hug and kiss me, and then
they left. I’ve never felt so alone. Madison
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
again thinking about Maia, who was in
with her Grandma. I had no baby boy, no
uterus, and I nearly lost my life. Maia
almost lost her Mother. Madison
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!!
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
to bring home our beautiful daughter Amara Selamawit. Ethiopia
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.