Always Knew Love

Many ask "how did you decide to choose what you did?" My husband and I have always been on the same page on when comes to choices that affect our life together. We knew our baby girl was given the diagonsis in which if she had made it to full term would have been very short and would have consisted of physical pain for her. We wanted a baby so badly but we knew what we had to do. We knew when we became parents at day one after conception we were responsible for the the welfare and protection of the life inside me. We decided to take on the lifetime of emotional pain ourselves so that our little one would not have to feel one moment of physical pain. Never did we imagine when we elected to get the screening test done we would make the decision to terminate but love is a powerful motivator and will make you bring great heartache upon ourself to spare a loved one from suffering. We feel we were given the opportunity to learn about our baby's condition in order to act upon it out of compassion and love. So that's what we did.  We ended a lifetime of suffering for our baby at 15 weeks and 5 days. Myself nor the baby felt anything. She was never touched my fear, she was never cold, never hungry, never alone and more importantly she always knew love.

Saying Goodbye without being able to say Hello

4:30 AM

Alarm goes off, shower, get dressed, no breakfast allowed today

5:00 AM

Get into car start drive to Louisville

6:00 AM

Stop at McDonald’s to use restroom and grab dear husband breakfast, still no breakfast for me

7:00 AM

Arrive in downtown Louisville. Drive around the block to locate the destination and scope out the protestors. I luckily am a great Googler and had found out that this clinic was very well known for large protests pretty much every day. There are already at least 10 protestors hanging outside of the clinic carrying very disturbing signs. We knew this was going to be quite the experience.

7:15 AM

Start to walk to the clinic. Stopped by the clinic escorts telling us the clinic will not open their doors until 7:30. It’s best to stay in our car to avoid having to listen to protestors scream at you while waiting to get inside. One of the escorts would come up to let us know when she saw the clinic staff arrive.

Waiting the 15 minutes seemed like an eternity. I was very anxious. I had step my upcoming day into four steps. And getting into the clinic past the protestors was step 1.

7:25 AM

Escort comes to get us from our car. We start out from the parking garage to the clinic front doors. As soon as we get down the stairs outside of the garage protestors are standing there waiting for us. They start to rattle off their propaganda, “We can help you. We have other options.” They said they have a facility nearby that can help us save our baby, etc. You get the idea. The escorts attempt to comfort us by saying we don’t have to listen to them and let us know that we almost to the front doors. This continues until we reach the front doors at the clinic where we are greeted by someone opening the door for the incoming patients.

7:30 AM

While waiting in line you can see the protestors through the tinted windows. I could not believe some of the chants or songs I heard. One patient was unlucky; she got followed by a rather intense protestor. He literally screamed in her face the entire way down the sidewalk until she reached the front door.

7:45 AM

Checked in and sitting the waiting room while the rest of the patients get registered.

8:00 AM

All patients are brought back into the facility alone. No friend, husband, family member is allowed back beyond the waiting room doors. We are told to sit in another room with chairs to wait to be called to for our procedures and then to get our lab work and ultrasound done.

8:15 AM

I am first to get my payment taken care of. The clinic director also proceeds to tell me that since I am here for a therapeutic termination that my husband can come back to sit with me until it is time for me to go into the procedure.  This might have been the best news of the day. I wouldn’t be alone sitting waiting and neither would my husband. After getting my payment taken care of, I then got my vitals taken, blood drawn, and ultrasound performed. I was absolutely dreading the ultrasound. I did not want to have to look. Luckily, there was not a screen other than the one for the ultrasound tech.

9:00 AM

My husband got to join me inside the clinic and in a private waiting room where we were separate from the other patients.

9:10 AM

We get to watch a video about the procedure. We then are taken into a counselor’s office to discuss any questions we had, the procedure, and to make sure I was making this choice myself and not anyone else was pressuring me to have this procedure performed.  We then went back to our waiting room until the doctor arrived.

9:45 AM

The doctor had arrived and I was taken back to a private room for to have the first part of the procedure completed. We were lucky to have found out the diagnosis as early as we did. I was just under 16 weeks and between 12 – 16 weeks the procedure was one day. After 16 weeks it turned into a two day procedure.

The doctor spoke to me for a few minutes. She first gave her sentiments that our baby had trisomy 13. She asked why we came traveled to Louisville. She was surprised to hear that there were not any facilities near where we lived. I told her I was glad to have a great ob/gyn practice that was although not able to perform the procedure themselves but were willing to help me do what I wanted and ultimately find this clinic for me.

She then explained the first part of the procedure which I had read a lot about online so I felt prepared. She inserted the laminaria into my cervix which are thin sticks made from a special seaweed material that widen as they absorb moisture from your body. This was probably the most physically painful part of the procedure. Immediately, I had some cramping and really felt uncomfortable. I then went back to waiting room. I was to keep the laminaria in for 2 hours before the second part of the procedure would occur. This was my step 2. Step 2 done and two more to go.

10:00 AM

For the next hour and a half my husband and I hung out in one of the waiting rooms away from the rest of the patients. On this particular day there were around 15 women there getting similar procedures to terminate their pregnancy.  Some were very early on in their pregnancy and would be given medical abortions to stop their pregnancy. And the others were there for surgical abortions which would require surgery including general anesthesia. During this downtime, my husband tried to catch a cat nap while listening to music. I watched a movie to help pass the time and keep my mind from thinking about what was really going on and the pain I was in. I couldn’t bear to cry in the clinic. I put on my strong face and carried that with me for the rest of the day.

11:40 AM

It was time for other patients and me to be moved downstairs to surgery prep. At this time my husband was to go back to the original waiting room with the other people who were there accompanying their respective patients. We all went down stairs and were told to change into gowns. We were given lockers for our belongings. Then we told to move onto our hospital gurney.

Waiting in this cold room was quite a lonely experience and somber. There were 6 other women in the room awaiting their turn for surgery. We were first greeted by the doctor and then the anesthesiologist. We signed that we understood the risks involved with the anesthesia. Then one by one the nurse inserted an arterial catheter for and IV. A few of us including myself were given Pitocin via an IV to help the cervix dilate even more.

One by one were wheeled into the operation room with about 15 – 20 minutes between each patient from what I could estimate without any clock or watch. This was the hardest time for me. I was left with only my thoughts. Nothing to distract me: no noise, no talking, nothing to watch, not even a clock. I spent a majority of the time holding back tears and emotion as the room was so silent you could have heard a pin drop. I actually was so tired due to the lack of sleep over the past few days I kept drifting to sleep for a few seconds and awaking back up. 

12:30 PM

It was finally my turn. The nurse wheeled me into the operating room. I was assisted onto the table and my legs were placed in stirrups. My D&E procedure was ready to be performed. All of the proper tools that assisted the doctor had been put into perfect location and new sterile tools were being opened for me.  The anesthesist said she was going to hook me up to an IV that would make me sleepy. I replied that I was so tired I'm just going to close my eyes. Step three was complete and I was drifting off to sleep for the next ten minutes with the procedure was completed. 

12:50 PM

The next thing I remember was waking up in the recovery room. I vaguely remember being helped off the gurney into the chair in recovery. The only reason I recall that was because I remember the nurse telling my to hold my sanitary napkin in place. Now step four was upon me: get awake and stay awake so I could be released from recovery. I knew the best way I would come out of anesthesia was to talk based on previous experience. So I'm pretty sure I was asking all kinds of questions and might have been chatting with another patient in the room. I felt as if I drunk so who knows what I said. I also remember wanting to get the catheter out of my arm. I was told several times I had to keep it in my arm until I was changed. 

The nurse handed me  Advil and ginger ale once I seemed awake enough. I refused the Advil as I cannot swallow pills but gladly accepted the ginger ale. I was so thirty as I hadn't had more than a few ounces of water upon waking up which at this time was seven hours ago. I was also slightly hungry but the only thing they had to offer was crackers and being gluten free I just asked for more ginger ale. 

1:00 PM

I'm not entirely sure how long I was in recovery but it couldn't have been long. Before I knew it I was being asked to use the restroom and then change back into my clothes. This was quite the experience as their was a step back unit the locker room. I am pretty sure I almost fell over getting back in there. The feeling of having a fun night out of drinking was still present. I successfully changed back into my clothes and then was told to come back to the recovery room so remove the catheter. It felt so great to have this removed. After that the nurse said I seemed so alert, from talking of course, that I was ready to be released. She went over the post-op instructions and gave me a prescription for antibiotics. I was then escorted back up to my husband and we were free to leave. 

1:20 PM 

After a big hug, we were on our way back to our car. The protestors were gone and the city was quiet. We arrived back into the car I immediately took some pain medicine along with a snack and large bottle of water. We were on our   two hour drive back home together and I was no longer pregnant. 

Heartbreaking Decisions

So what now, you might ask? Well the preliminary amnio results were due back 3 days after the test. The lab would do a FISH test. FISH stands for fluorescent in situ hybridization. FISH testing is a relatively new cytogenetic technique that allows a cytogeneticist to determine how many copies of a particular chromosome are present without having to go through all of the steps involved in producing a karyotype. For example, FISH analysis can quickly tell you how many number 13 chromosomes are present, but it cannot tell you anything about the structure of those chromosomes. In our case that is what we needed to know. Was there an excess of the 13^th chromosome in the baby’s DNA. The final results which would be the full karyotype of the chromosome including the structure would not be available for at least 7 -10 days as the cells had to be left to grow.

In the meantime we discussed our options and made our plan A., plan B., etc. Now this is where our story gets to the point of major decision that no one should ever have to go through. Do you carry the baby to full term and hope it can live for a few days, weeks, or months? Or do you terminate the pregnancy to save the baby from suffering if it does make it to full term?

 I think my husband and I made this decision on what we would do depending on the results we were given after the testing the first night after learning about the possibility of the trisomy 13. We had gone into the original screening test saying we wanted to know if there were any problems ahead of time so we could plan accordingly. We bot are engineers who are very scientific and know that advanced in modern medicine have been huge. We determined we would be part of the population that utilizes the advanced testing regardless whether we were “at risk” for anything or not. I t was covered by insurance it was a “no brainer” to us. Never did we imagine we would be one of those couples that were given heartbreaking information that would make us choose.  

We knew that carrying a trisomy 13 baby to full term was already not likely. We knew even more that bringing a trisomy 13 baby into the world was not going to be much of a life for the baby. We didn’t want to bring our child into this world just to suffer. We wanted this baby so badly and we had gone through a lot to even get to this point. But we knew we had to follow our heart if we did receive the some of the worst news that any parent could possibly receive.

Ultrasound and Amnio

At this point we have had an ultrasound at 6 weeks, 8 weeks, 10 weeks, 12 weeks, 13 weeks and 4 days, and now at 15 weeks and 2 days. This baby might be the most photographed baby in the world. What we never expected was that this day in our life that everything would change.

The ultrasound first started with the technician looking at all aspects of the baby. If she saw anything alarming, she didn’t share with us .The doctor then came in started to navigate her way around the baby as well. She noticed something did not look right with the nose. To the naked eye it appeared very large. I my mind it looked almost like a rounded bird beck. I knew something wasn’t right. The doctor decided to perform a 3D ultrasound to get a better look.

The result of the 3D ultrasound was one of the two images I wish I could get out of my mind. Looking at the baby from the front profile was quite disturbing. Something was absolutely not right with the nose and mouth. It very well could have been a cleft palate but it was too hard to really determine exactly what it was at this point in time. I this point my heart started to race. I knew things were not looking great for the diagnosis.

At this point we definitely wanted to proceed with the amnio. As the doctor and ultrasound tech prepared for the test I was just ready to have this procedure over. I knew it was going to consist of a large needle being inserted into my stomach and probably some intense cramping. I was nervous but knew this was something I would have to just get through. Just like everything else thus far in our journey of creating a family.

I had decided that I did not want to see anything that went on during the procedure so I placed the scarf I wore that day over my face and just tried to control my breathing to help myself relax. My husband has prior experience with fainting after giving blood and was unable to watch me give myself shots during fertility treatments so he decided to turn his chair towards the corner until the procedure was over.

The second image I think I will vividly recall for a lifetime is what we saw after the procedure was done. The doctor needed to monitor the baby’s heart rate and movement to make sure nothing occurred during the procedure. While this was happening we got a closer look of the hands. They were not clenched but there indeed were extra fingers on each hand. In between the intense cramping from the procedure and the new found soft marker that was discovered I was not feeling well. As soon as the doctor felt the room I fell to tears. I was in so much pain physically and emotionally.  We knew the possibility of the baby having trisomy 13 was unfortunately very likely at this point.

Once we were done at the hospital I was very glad my husband and I had driven together. I don’t think I would have been able to drive home solo with the pain I was in. We hadn’t eaten any lunch so we stopped to get some food on the way home. We spent the rest of the night hanging out and resting. I of course did a lot of googling and thinking about all the what ifs moving forward. 

Learning things we never thought we would before.

At the genetic counselor’s office we were explained the science of trisomies and the calculated risk for our situation. We originally thought that the screening test meant there was a pretty much 100% chance we had a baby with trisomy 13. She explained that in fact based on my age upon conception, the age I would be at delivery, and the gestational age of the baby our risk was actually only about 1 in 6 or 14%. Hearing this statistic helped us a bit but we knew we wouldn’t be for sure until we went through the level II ultrasound and then the amniocentesis.

The level II ultrasound, which most pregnant women have done around week 20, would be a very detailed ultrasound that looks at the anatomy of the baby. At this time I was only 15 weeks and 2 days but we were hopeful the ultrasound would be able to confirm or deny any of the trisomy 13 soft markers such as polydactyl (extra fingers or toes), clenched hands, clubbed feet, cleft lip/palate, heart defects, enlarged kidneys, and neural tube defects.

The amniocentesis (amnio) is prenatal test where a small amount of the amniotic fluid is removed for testing. The sample of amniotic fluid is removed through a fine needle inserted into the uterus through the abdomen, under ultrasound guidance. The fluid is then sent to a laboratory for a full chromosome analysis. The amnio can be done between after 15 weeks. The accuracy is about 99.4%. There is a small risk that an amniocentesis could cause a miscarriage (less than 1%, or approximately 1 in 200 to 1 in 400). But at this point the risk of having the amnio done was less than the risk of us having a baby with a trisomy so we knew we had to go through with the testing. 

We decided to proceed with the ultrasound and then based on those results we would then get the amnio done following the ultrasound. 

What is a trisomy?

Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year. Trisomy 13 occurs in about 1 in 16,000 newborns.

Trisomy means three copies of one chromosome. In this case, for trisomy 13, it would have been three copies of the 13^th chromosome. Trisomies can occur with any chromosome, but often result in miscarriage, rather than live birth. For example, Trisomy 16 is the most common trisomy in human pregnancies, occurring in more than 1% of pregnancies; only those pregnancies, in which some normal cells occur in addition to the trisomic cells, or mosaic trisomy 16, survive. This condition, however, usually results in spontaneous miscarriage in the first trimester. The most common trisomies are trisomy 21 (Down syndrome), trisomy 18 (Edwards syndrome), trisomy 13 (Patau syndrome), trisomy 9, trisomy 8, and trisomy 22.

Most organisms that reproduce sexually have pairs of chromosomes in each cell, with one chromosome inherited from each parent.  Humans have 46 chromosomes (i.e. 23 pairs of chromosomes). Half from the mother and half from the father. If the chromosome pairs fail to separate properly during cell division, the egg or sperm may end up with a second copy of one of the chromosomes.

It's just a simple blood test, they said.....

We finally got the test results back from the genetic screening blood test I took about 10 days prior. I knew on this particular Monday we would most likely be getting a phone call with the test results. I had been anxious to find out the gender of the baby but never did I really put any thought into the real reason behind the test. It was to screen for the potential for any genetic disorders that might be present in the baby.

The test was called the Progenity test. It is a non-invasive prenatal test that can determine with a high degree of accuracy whether your baby may have certain genetic disorders, such as Down syndrome, Trisomy 13, and Trisomy 18. The test requires only a blood draw, and is safe for mother and baby. During pregnancy, some of the baby’s DNA crosses the placenta into the mother’s bloodstream. DNA is the blueprint of life—it holds all of the genetic information needed for our bodies to function. DNA carries this genetic information on chromosomes. Healthy humans have 23 pairs of chromosomes. Any more or less can lead to problems. The test screens for the most common chromosomal abnormalities, which can cause serious birth defects, intellectual disability, or other problems in the baby. These disorders are not typically inherited. Instead, they are usually caused by a random error during formation of the egg or sperm, or during the earliest stages of the baby’s development.

Around 4 pm that day I get a call from the doctor who I spoke with before the test was administered. I can remember the words clearly: “Your baby tested positive for Trisomy 13.” I immediately started to google the condition while the doctor was still talking. I had previously briefly looked over what the test screened for but I really didn’t know what the conditions were besides Down syndrome. The doctor proceeded to say that she was going to recommend me to meet with the genetic counselor at the hospital and I needed to call to set up an appointment.  She said I would then have the opportunity to get a Level II ultrasound completed to further evaluate the screening results by looking at the baby. I then would have the ability to get an amniocentesis performed to get a diagnostic of the baby’s chromosomes. The doctor then said you know sometimes there are false positives sometimes on these tests but they were rare. I was stunned but knew I had to call my husband immediately to tell him the news.

After calling my husband, I decided I wasn’t going to get anything else done at work so I went home. Once home, my husband and I sat on the couch, talked, and sobbed together. We did some research about the condition and talked about the what ifs. We talked about the next appointment and what we wanted to accomplish. We decided we wanted to get the amniocentesis completed at that appointment. We determined the risks of the amniocentesis were less than the risk of not getting confirmation of what the baby really had or didn’t have.  Never did we ever imagine we would be going through these discussions. After all we just wanted a “healthy baby” but more and more we started to realize that may not be the reality we were dealt.

Announcement to the World!

At 14 weeks I finally started to feel better. Several foods started to sound and taste better again. I was finally in the second trimester. I also started to let myself get a little more excited about the expectation of a baby come this fall. At 14 weeks, we finally announced the arrival of baby to the rest of the world including social media. We had done a photo shoot at our alumna mater’s football stadium that was currently under construction. We tagged along with the fact that the stadium and our baby were going to be “completed” in fall 2015. We posted the photo that we had taken on campus with a baby onesie with the school’s mascot on it on social media. We photoshopped the words “Baby Under Construction: Estimated Completion Fall 2015.” We could not have been excited to share this news with our friends and family. We had held this news a secret except to immediate family and close friends until we were knew we were in the clear, aka the second trimester.

The peach revealing some personality at 13 weeks!

I went in for a routine appointment to get screened for genetic disorders. My husband and I decided we would rather know ahead of time whether our child had the risk for a genetic disorder prior to birth so we could be prepared. So we elected to get the screening done. We were told all it would be was an ultrasound. I sat down with the ultrasound tech and got the warm gel applied to my tummy to start the screening. Well low and behold our baby was currently hanging on its tummy vs. its back where it needed to be for the measurements to be taken. The tech tried to jiggle the area to get the baby to flip. Well this morning the baby decided to be a little difficult and not move. It must have been comfy and personally I don’t blame it. I love lying on my stomach although that is not an option currently.

She said they give the baby three tried to flip around. She told me to wait 10 minute in the waiting room and we’d try again. I figured maybe if I’d empty my bladder the baby might have some room to move around so I went to the bathroom in hopes that might help. The second round proved that the baby was able to move around better now but was still lying on its side vs. back. Once again no luck in moving the baby.

After this try, I decided to walk around outside the office in hopes that might help. I also did a little jumping around praying anything would help. During the third ultrasound the baby had indeed moved onto its back but it was more upright than lying down and this still was not the right position. I guess after the second fail the tech had spoken to someone else in the office about the options for me. As I was already 13 weeks and 4 days and the test was only able to be done until 13 weeks and 6 days so rescheduling the appointment wasn’t an option. Since I had not started at this office until the week prior I really missed the key window of opportunity.  She mentioned that there was a new test available that just collected the mother’s blood and was able to pull the babies blood from the maternal blood and examine the chromosomes. The only caveat was that this test was not yet implemented as an option in this office. They had not talked to all the doctors about the test yet.  

Luckily, the staff was willing to talk to the head doctor about my situation as they had planned to start offering the test in the next week or so anyhow. They were able to fit me in to be counselled about the test my one of the OB doctors and also were able to secure the right paperwork and testing equipment for me to get the test completed today. So shortly after filing out some paperwork I spoke to the doctor confirmed that the test was just blood and would have a minimal cost. It would test for all genetic disorders and also happened to be a little more accurate. Oh and it also would tell us the gender of the baby if we elected to find out. The nurse came in after speaking to the doctor and drew my blood and I was on my merry way about 90 minutes after I first arrived at the office. Since was obviously not how I had intended to spend my morning but I was glad a solution as found and everything worked out. We already have realized this child is going to give us a run for our money and is already taking some of our personalities that we express at times! And who knows we might be finding out the gender sooner than expected but that will be a secret that we will not be telling anytime soon!