[Congressional Record Volume 159, Number 16 (Monday, February 4, 2013)]
[Extensions of Remarks]
[Pages E89-E90]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                  THE EVAN AMENDMENT BY HOLLY SCHEUREN

                                 ______
                                 

                            HON. MARK POCAN

                              of wisconsin

                    in the house of representatives

                        Monday, February 4, 2013

  Mr. POCAN. Mr. Speaker, I would like to submit the following 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.

[[Page E90]]

       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 abortion 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 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 5 pm, 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 crying.
       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 a 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.

                          ____________________