Am I a hypocrite?

Ever since Mark Zuckerberg and countless other friends and celebrities have announced their struggle with miscarriages, pregnancy loss, and infertility I've felt empowered that I shared my story. I didn't announce I was expecting until I was 14 weeks. And I was one of those naive women who thought to myself "I made it to 12 weeks - I'm in the clear now! I can't wait to tell my family and friends." Never did I imagine that what would happen the follow week would a a harsh reality that I would be faced with.  After all I thought it was a simple blood test.

At the time I wasn't sure if I would share the truth about everything my husband and I went through that fateful week in May. But after some time went on we realized after several conversations we couldn't continue on living a lie. We had to be truthful and shed light on the tough decision we made for ourselves but also in the hope that others who might be faced with the same decision that they are not alone.

At the time I was very confident in sharing my story. Both of us received so much support from family and friends that helped us get through that tough time. In hindsight had I not shared that I was expecting, I doubt I would have had the love and support from so many people nor do I think I would have been as willing to share my story so openly. So although some have said to me, "It's too bad you just announced a week or so earlier." I am glad we did. Our little girl was sent lots of love although it wasn't in the human touch form.

Now as I am moving beyond the past and healing more everyday, I wonder to myself will I be as willing to share that we are expecting again. Do I want to be caught again "with my pants down" in the event that something happens again? Would I rather only have a few people know in that event or would I rather once again have my entire social network know and once again shower us with love and support? Will I offend someone who is also struggling with infertility and is jealous we were able to get pregnant again and they are still working on getting that second pink line for the first time?These questions cross my mind daily.

Of course, then I come across articles like this that make me want to cheer these women on. But here I am pondering whether I'll announce at all let alone at 12 weeks or sooner. Am I a hypocrite or what? Right now the jury is still out what I'll do if/when I am blessed with another pregnancy.

Embracing the Present

In attempt to embrace the fact that I was not pregnant any longer, I told my husband I wanted to do all the things I could not do while I was pregnant.  That included eating sushi, having a few drinks, eating lunch meat, doing all workout movements I wanted, and lastly going to Skyzone. I figured if this is the present state I was going to be in I was going to take advantage of it! It wasn't my ideal situation but it was the cards I was dealt so I was going to roll with it.

I successfully hit one of those pregnant avoidance's the day after our termination at our favorite sushi joint with a large plate of sashimi. I secondly enjoyed a nice glass of red wine in Florida the week following. I've definitely had my fair share of lunch meat and have been doing every high impact workout activity as soon as I was release to exercise again. And lastly a month following the termination I made it to Skyzone to jump on the trampolines and do some flips into the foam pit.

Now don’t get me wrong I wish my situation was different but I am trying to continue to live my life to the fullest. I’m going to take advantage of every opportunity I’m given. I happened to have a work trip planned to California and then Arizona and my sister had planned to tag along for the first part of the trip to spend some time in the Cali sun. At the time we had not planned to go to Disneyland since I would not have been able to ride the rides but since my condition had changed we decided to go to Disney’s California Adventure. I made sure we rode all the roller coasters and any other ride I could get my sister to ride. I was getting my money’s worth as well as soaking up this opportunity that had been presented.  

So presently as my husband and I are grieving, healing, and trying to look at the brightside of life  we are going to enjoy some fun times together as a couple and with friends and family. I found comfort in this quote by the one and only Budda,  "Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment." This is what I will try to do for the next few months as I adjust to my life experiences in the last few months and try not to think about the future of our family too much although I know that will be the hard part. 

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.

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.