Sadly, it has come to my attention the number of flaws that are currently in our State’s Laws for TFMR (termination for medical reasons). Currently, TFMR cannot be performed by the care of your own medical team and parents are placed under a restricting time frame of 21 weeks and 6 days, when anomaly scans are not performed until 20 weeks. This is something I wish NO PARENT would ever have to experience, yet my husband and I were forced to go through the most traumatizing experience of our lives, and sadly it was mostly due to our State Laws. I would like to take this time to present to you our story and the trauma we have faced. I do this with the hope that someone will have the will and courage to help us make a difference, so no parents have to endure the same painful experience we did.
After my husband and I found out we were pregnant for the first time, we were a little nervous, but EXTREMELY excited. Being in our 30s, we knew it was a blessing that we became pregnant and that we would finally get to start our family. Seeing this was our first (and only pregnancy), everything was very new to us. I had my first appointment and after reviewing my charts and my overall health, they decided I was not high risk and wouldn’t need any special care. They set me up for another appointment in four weeks and sent me on my way. The next few appointments were very basic, with no ultrasound seeing I was not considered high risk, and I was in and out in no time. It finally came time for my 20-week ultrasound, which was done for us at 21 weeks due to scheduling, and my husband and I were hit with nothing but traumatizing news.
After having our hour-long anatomy ultrasound, we were sent in with our Midwife who reviewed the findings. The long list of issues they had found during the ultrasound included: Velamentous Insertion, ventriculomegaly, large septated omphalocele containing entire liver, choroid plexus cyst, ventricular septal defect, poor fetal growth (baby measuring under 10%), and suspected chromosome anomaly. In normal terms: brain issue, heart issue, liver issue and placenta issue, with the baby under the 10% mark for size, potentially caused by a chromosomal issue. My husband and I sat there in shock as the Midwife proceeded to ask us “How are you feeling?” All I could manage to say through tears was “All I am hearing is that everything is wrong with our baby.”
We were rushed to see the MFM specialist in our area. They performed their own ultrasound and proceeded to give us our options. The specialist informed us right off the bat that she was very convinced that this would be related to a Chromosomal Disorder, most likely one that was “not compatible with life”. Her next words were “TERMINATION OF PREGNANCY”. Never in my life did I think this happened to people or that this was even an option while pregnant with a very WANTED pregnancy. I could barely focus on what the specialist was saying. In order to find out what was exactly wrong with our baby, we would have to have an amniocentesis done to test the fluids from inside the womb. Here is where the laws made this extremely hard on our new little family. Seeing I was already 21 weeks along, the quickest we could get in for an amnio was in two days down at Children’s Hospital in Milwaukee. They set up our appointment and we were then on a mission to beat the clock that Wisconsin Laws required us to face.
My husband and I headed down to Milwaukee at 5:00 am for what was the longest day of our lives. We met first with the Ultrasound tech and had another ultrasound performed. The MFM specialist entered and read the results. For the first time, we were giving a little bit of hope. They had removed a few issues off the table. They no longer could see any heart issues and the cord to the placenta was in the correct spot. However, the entire liver was still out of the body and specific structures of the brain were still missing from the ultrasound images. We agreed to have the amnio done in order to help us learn the real underlying issue. They then sent us over to speak with additional surgeons and specialists so we could hear our options for a full term pregnancy with delivery and what that could potentially look like.
We met with the surgeon that specializes in omphalocele procedures. He first let us know that we would have to give birth in Milwaukee. The delivery would have to be a C section in order to avoid the liver sac erupting. Once born, the baby would be rushed immediately into surgery, which would consist of a three-month procedure, due to the size of the sac. That would mean a minimum of three months hooked up to a ventilator, along with a feeding tube. Seeing the sac was so large, the baby’s body would not be big enough to just place the liver back inside. They would have to wait for the baby to grow and potentially remove all the organs of the abdomen and restack them in the baby in order to fit. The baby’s lungs would also have a fairly high chance of being underdeveloped seeing the body cavity would not grow to size with the liver being outside of the body. Overall, there was a lot of room for error, and a very small chance of everything working out perfectly.
The specialist also made us aware that the omphalocele could still become larger during our remaining months of pregnancy and could potentially pull more major organs out into the sac and that the sac could burst at any moment inside of me, which could lead to major medical issues for myself and potentially instant death for our baby.
At this point, I still was not on board with TFMR (termination for medical reasons). I knew our future sounded very hard to get through, but I knew I would do anything to keep our little baby with us. They still could not tell for sure the issue with the brain, so they suggested I have an MRI in order to discover the true issue. We sat at children’s until 6:30 pm in order to have this one last test performed. We finally were able to head home and would have the brain specialist call us in the morning with the results.
The results were, once again, not good but not bad. They had found that the baby had only developed half of the corpus callosum. This is the part of the brain that connects the two hemispheres, permitting communication between right and left sides. He explained that this normally would not raise a lot of concern; that children with this issue alone may only face mild learning disabilities, coordination issues, and potential psychiatric issues, leading to a life filled with therapies and additional hospital visits. This did not scare me, and I still was not convinced of TFMR. He then proceeded to move on to our outcome in general. Seeing our baby still had the major omphalocele, his recovery and life would look much different. Because the baby would be required to be on a ventilator and feeding tube for a MINIMUM of three months and potentially up to a year, the brain would not begin to function right after birth. This could potentially lead to severe disabilities, such as not being able to speak, walk or function at all. Sadly, this was not something that they could predict for sure. He also reminded us that on top of both of these major issues, we still were facing a potential chromosomal defect which would only make matters worse. He gave us a very small window of a 10% chance that our baby’s would fall in the “normal” category, which still would include the learning, cognitive, psychological and physical disabilities.
After taking in all of this information, we still would not have our amnio results back for up to a week. Sadly, we were now faced with having to make a decision within 3 days, meaning we would not get to wait to have our results back. The State of Wisconsin has a cutoff date for termination of 21 weeks and 6 days. Even though all of the specialists had suggested termination as the best route, we would not have the privilege of having this procedure done in their care. Instead, I was forced to call the one and only abortion clinic in Wisconsin that performs this procedure at that gestation to see if I could even get in for an appointment.
After speaking for hours on end with my husband, friends and family and additional medical connections, we had come to the conclusion that our baby would endure the least pain and suffering if we proceeded with TFMR. Seeing we still had 20 weeks of potentially life-threatening issues, the recovery time after birth could take over a year, the birth alone and liver procedure could still lead to death, and our child could face years of potential suffering, we decided to take the path with more definite answers. Not only did we have to make the decision based just on our baby, but we also had to take into consideration the fact that my husband is a dairy farmer, and he not only works long hours, but has a business that currently does not turn a profit. With a child with disabilities, not only would we face larger financial struggles, but I would also have to become the main caretaker, which could potentially lead to me losing my job. I could only imagine the hardship that this would put on our little family and my relationship with my husband. It could lead to resentment, fighting, loss of our business, and potentially divorce.
I finally made the decision to call and see if it was even an option for me to get an appointment at Affiliated Medical Services Abortion Clinic in Milwaukee. I first spoke with the attendant at the front desk who informed me that they only performed that procedure on Thursdays and that would be after our cutoff date. I pleaded with him that my case was different. He agreed to let me speak with a manager who asked for more details in regard to our case. She asked if I could have our scans forwarded over from Children’s and have our nurse contact her directly. I was able to make this happen, and they called me back agreeing to set the procedure up for Tuesday in order to accommodate our STATE CUT OFF DATE!
Within two days, my husband and I were packing back up to head down to Milwaukee. As we arrived, we were greeted with none other than abortion protestors. Those last moments with my baby were spent walking through a crowd of activists shouting, “you’re killing your baby” and “your doctors are lying to you”. OF COURSE I wish I could say my doctors were lying to me! I was already facing the toughest decision of my life; I didn’t need people that didn’t know our story trying to tell us we were making the wrong decision.
Inside the clinic, we were met by a concealed window where I had to slide my id under the crack to let them know who I was. They asked my name, made me pay a “DEPOSIT” of $25 cash in case my payment didn’t go through and then proceeded to make me pay $2800 for a procedure that I ultimately never would have wanted to have. They handed me paperwork to fill out that had NOTHING relatable to why we were even there. The sheet was your typical clinic questionnaire, making me answer questions like: have you had STDs, how many abortions have you had, what kind of contraception would you like. I was PISSED!!!! I did not want to be there, my DOCTORS that recommended me here knew this was 100% for medical reasons only. I crossed out 90% of the form and wrote in the actual information that they should have been asking.
They then sent my husband and I upstairs. The nurse called just me back and started reading off her list of rules. She handed me the pills that started the process of dilation and made me go into a bathroom that had no door handle…just a hole through the door and insert them myself (as she sat right at the door listening). I couldn’t believe what was happening, not only did I feel like I was in prison, but I also felt like they were making me kill my own, very wanted child. She finally called my husband in and went over the potential risk of the procedure. She handed me a cup filled with pills and neglected to go over our private options for our baby’s remains.
When she asked if we had any questions, I informed her that we were told that we would be given private options. I had earlier asked Children’s Hospital if we could donate our baby’s body back for research and they said they were unable but that we would have options for cremation and burial provided at the clinic. The nurse at the clinic was dumbfounded and had no idea what I was talking about. She asked if I wanted her to call the local funeral home that she knew of and see if they could offer us any services. I said yes and prayed they would actually be able to help us. She returned back to tell us they could not meet or speak with us unless we would come back to town on Thursday (two days later) to discuss our options and payment. I was appalled, to say the least. I contacted both my sister and a good friend that have contacts in the funeral business back in our area and was contacted immediately by one of our local funeral homes in Green Bay that provides pro bono cremation and funerals for parents facing child loss. After going over our situation, the funeral director was in shock. He could not believe that they did not have private options available. He called the clinic directly and had to walk the clinic through the process of securing the body for him to bring back home for proper cremation.
We were placed in a back “waiting room” that again had no door handle, was missing ceiling tiles and had all of the cables stolen off of the TV. We sat there for two hours before the nurse returned with another dose of the drugs that she once again made me insert myself. We waited another antagonizing two hours before ever laying eyes on a real doctor. The doctor finally came in and introduced herself and her nurse. She asked if we had any questions or concerns and I let her know exactly how I was feeling. I informed her that we were treated like a number, not like a family going through the toughest day of their lives. There was no empathy, no understanding and ZERO comparison. On top of that, the clinic was falling apart, nothing felt or looked sterile or safe and I was not only concerned for the procedure but my own life at that point. It was already bad enough that we were losing our own baby but now I was scared for myself, and so was my husband.
I couldn’t understand…why were my last moments with my baby coming down to this. Why would the STATE LAWS force me to have to be in this back-alley clinic instead of in the comfort of my Midwives office or Children’s Hospital with all of the staff who understood our baby’s complications and knew that we were making the right decision. There we would at least be treated with the empathy and the compassion that we needed to get through the day. At that point I didn’t even care if we would have had to pay $50,000 to have the procedure done by our medical staff that understood our situation.
To make matters worse, I was walked into what looked like a retro dentist office / torture chamber that had their false ceiling covered in travel postcards. I sat and cried….and cried…and cried knowing that I made this decision and that the last moments I would have with my first baby were in this hellhole, all because of the GOVERNMENT & LAWS!
I am writing you this very personal story because I am downright disgusted and saddened by the laws and what the future may hold. The fact that families in our situation are forced to not only QUICKLY make decisions after a 20-week anatomy scan, but also are not allowed to have this procedure done by their own doctors after the TOP SPECIALIST of the State are Highly Recommending it is appalling! I would have never known this very small window of terminations for medical reasons even existed if it didn’t happen to me and I am sure that Lawmakers are also unaware that this is not only very REAL but a MAJOR issue. This needs to be made right. There needs to be changes made to the law in order to allow parents in this exact scenario to have options…options that allow them to have TMFR done directly by the doctors that have recommended it. Why you think it is okay for us to have to suffer more and have this done in a hurry, in a low-income abortion clinic, is insulting and cruel. I can’t even imagine what parents will do if laws are changed to lower abortion timeframe to 6 weeks. Majority of women don’t even know they are pregnant at that point and typically are not even allowed to see a doctor until after 8 weeks!
If you are a parent, you need to put yourself into this situation. If you were faced with all of these medical issues and given the choice to keep your child from suffering or to bring your child into a life FILLED with nothing but suffering, what would you do??? Please help me make changes! Our government needs to do better and help make our future have better outcomes.
Please let me know if you can help and if there is anything I can do to help make changes for the future.