Walk a Mile in My Shoes

Within the last year a lot has changed in my world as well as the world around me. Personally it’s been almost one year since my husband and I got married. It’s been over 6 months since traveled across the world to the land down under. And now it’s been over 2 months since we said goodbye without being able to say hello to our baby girl. It’s been a month or more since the Supreme Court ruled in support of gay marriage. There are now over 20 presidential candidates who are daily trying to make their way to top. And Bruce Jenner is now known as Caitlin Jenner. These news stories have stirred up quite the amount of opinions and thoughts across social media and daily conversation that sometimes make me cringe in disappointment or embarrassment for some of the comments that are said.

I’ve learned to live by trying my best not to judge someone based on my own life experiences, beliefs, or opinions. I have realized I have absolutely no idea how I would feel or react in a situation unless I have lived it.

I will never understand how it feels to be in a homosexual relationship and not have the ability to get married. I personally don’t think anyone else should really care that much if two males or females want to get married because they genuinely love each other and want to make a public commitment to each other in front of their family and friends through marriage. It doesn’t affect my life except I know that there will be more love in the world and hopefully in result of that love the world will become a happier place.

I realize I will never know how it feels to have lost an infant child. I have never been in that position. How can I judge how one grieves, how one might struggle through holidays and birthdays, and how one longs to fill that void in their life. Yes, I have suffered loss but in such a different way that I can’t even try to compare my feelings to that situation.

Can I understand why someone would not want to have more than one child? No. I don’t understand their circumstances or feelings on the decision. I cannot even begin to think about how it is to juggle motherhood, a job, a marriage and a social life with one child let alone two. I simply cannot judge someone who feels their family is complete with one child. Nor can I judge someone who says motherhood is hard. I haven’t been in that situation although someday I hope to be so I can realize their struggle was real and these are real life issues people deal with day in and day out.

Should I have the right to judge another woman who was sitting at that clinic with me who was in a totally different situation than I was in? I have no idea what their reason for being there that day was. Was it because they financially couldn’t afford to raise another child? Did they know that they were in a situation where the child would not be safe when coming into this world? Were they in fear of what their parents would do or say to them if they had found out and knew this was the best decision for them? I don’t know. I will never know and honestly I may not always agree with their decision but I will however not judge them. They were strong enough to know that this was the best decision for themselves, their family, and the baby’s life regardless the reasons behind it. I can only respect them for making the best decision for them at the present moment.

Should I expect someone to attempt to put their selves in my situation and hypothetically determine what they would have done? Of course people have and I’m sure they have judged me and not agreed with my decision. I understand it is hard not to try to understand by trying to put your own feelings and thoughts in those tough situations. But I will advise from my personal experiences don’t judge someone until you’ve walked a mile in their shoes. Be conscious of the things you might say as they might be offensive and unintentionally hurt someone else. Now I’m not saying you’re not entitled to your own opinion I’m just saying sometimes those opinions are better expressed in different ways or different situations.  Everyone has been given their own life to live and navigate. Just like no two snowflakes are alike no two people’s lives are going to be exactly the same. This is was make life so interesting and exciting. There are always new things to learn and new people to meet and learn their story. Keep on experiencing life and sometimes realize you may not understand someone’s struggles or successes until you have walked a mile in their shoes.

The Risk Moving Forward

The final amniocentesis results finally came back about 10 days following the FISH results. These unfortunately left us with additional unknown and several questions. For the final amnio results the cells were left to grow for 7 – 10 days and then they were to be tested to determine the exact karyotype of the baby’s chromosomes. Well 10 days later the cells never grew and therefore we ended up with inconclusive results. We obviously felt once again like the exception rather than the rule but our genetic counselor proceeded to tell us that this was something she’s seen in trisomy 13 before so although it’s rare it is common. I’m not sure how one can use rare and common in the same sentence but we went with it.  So now were left with the question of what type of trisomy 13 was it? Was it the genetically inherited type where for some reason either my husband or I had an extra piece of the 13^th chromosome attached to one of our chromosomes?  Or was it in fact a genetic fluke in that it was a random event and had a small chance of occurring again? And lastly was it full trisomy 13 or was it mosaic, which we’ll never truly know but odds are it was full trisomy 13?

We were left asking ourselves, what now? I had read a lot about what other genetic testing could be done in the event we found out we were indeed a carrier for something. This would involve going down the IVF route and doing pre-implantation genetic diagnosis (PGD) of the embryos before they inserted back into the mother for implantation. Which I’m sure if you have any idea how much IVF costs this only would increase that cost significantly as well as complications.

Luckily, we had great resources available to us that recommended we do parental chromosome analysis to determine if my husband or I have any chromosome anomalies. So after some fight and several conversations with my ob/gyn I was able to get us both a prescription to get this blood test performed. All we had to do was go to one of the hospitals labs to get it drawn. Now herein comes even more complications. Evidently the hospital doesn't run these tests very often so the first attempt to get the blood drawn was halted due to the staff not knowing how much blood to draw or the correct tube to use. After several phone conversations the following day we finally were able to get our genetic counselor to straighten out the test requirements with the lab.

My husband and I went back the following evening to get our blood drawn. Now anyone that knows my husband knows he does not do needles well. He knew we wasn't going to be able to give nor watch the fertility injections and he has a history of passing out with getting blood drawn. We made sure the lab staff knew his history and we made sure he was laying down during the procedure. Once his blood was drawn we made sure he sat in the chair for some time and after a few minutes he said he was feeling well and let me get my blood drawn. As soon as I was finished my husband said he was getting lightheaded so we immediately had him sit back down. Two minutes later he was passed out and went in and out of consciousness a few times. In my opinion one of the scariest things I’ve seen him go through before. I’d rather not see that again so I was hopeful that this was the last time either one of us would have to get blood drawn for quite some time.  

Two weeks later, we finally received the results. Both of our chromosome analyses were normal. We were not carriers for trisomy 13. This was quite the relief. Now the only chromosome we were concerned about what the 7^th chromosome. We still wanted to know whether I was a carrier for cystic fibrosis. This was supposed to be tested back in April but wasn't for some reason. Luckily, if I was not a carrier my husband would be spared of any needles so we were hoping for that based on the previous experiences. But as far as trisomy 13 we were now at a 1% chance of having trisomy 13 happening again in a future child. That 1% is significantly high based on the typical risk for other 29 year olds who are having children but we weren't scared. We knew we wanted a family and we were willing to go whatever necessary to get there this was just part of our journey. 

Don't Try to Compare Loss

After the procedure I had no regrets but I did feel alone in my experience. Don't get me wrong I knew of several friends who had lost babies due to miscarriage but my situation was different. It wasn't a spontaneous loss of the baby. I didn't feel comforted by people who said they've been in my shoes. I highly doubt they have been. I didn't enjoy comments that told me miscarriage happens 1 in 5 pregnancies. It hurt when people would ask if I forgot to take my pre-natal vitamins. It killed my soul when someone would say maybe it had to do with what kind of workout activities I was doing although if they knew anything we went through to get pregnant they would have known I've been very restricted.

It became very apparent either people had experienced loss and I respected that and glad they were trying to be comforting or they had no idea and would immediately insert mouth into foot with an ignorant comment. Luckily I had a thick skin and a good friend who had told me as soon as everything started to happen that she apologized for the ignorant comments people would say to me. 

Now don't get my wrong I appreciated every single thoughts, prayer, note, card, text, and flower that was sent to me. They were all meant well and I know no one was meaning to be hurtful but sometimes things people said were not helpful. I just was struggling to really connect to anyone else who has walked in my shoes. I just wanted someone to eventually open up and say I've suffered loss but in a little different way similar to my situation. 

In attempt to not feel alone I started searching around on the Internet for articles, books, blogs, etc. that would help. Here are some of the resources I found that made me realize I wasn't alone in receiving some hurtful comments and advice but this also helped me realize I had to come clean and tell the whole story. 

Articles:
There Is A Story Behind Every Loss

I am the face of a Heartbreaking Choice

My Abortion at 23 weeks

Book:
Our Heartbreaking Choices

In conclusion, a piece of advice to myself and anyone else who has a co-worker, family member, friend, etc. experience loss. Don't try to say something that might make them feel better. Just say I'm sorry for your loss. Ask them if you can do anything. Ask them if they want to talk. I unfortunately experienced this first hand on the other side as a friend of a bereaved parent almost a year ago when one of my best friends lost their son. I didn't know what to say or do but I knew the last thing I wanted to do was accidentally offend them in some way shape or form. I quickly realized these items were off the list of things to say:

Six Things Never to Say to a Bereaved Parent

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.

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.

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!