The Story of Aria by Sabrena Estes

This is our story of Trisomy 18, and our beautiful daughter Aria Lynn Teetzel. I am hoping that by telling my story it will help others who may be going through this or have went through this.  Also those who may know someone who have gone through something similar. At the very least, I hope that our story will touch those that are parents or hope to become parents. And help appreciate the true miracle that you have, and hold your babies a little bit closer to your heart.

It was late August when I took a pregnancy test and it showed up positive right away I was very excited and shocked at the same time. I immediately started digging in my medicine cabinet for another pregnancy test. When I found it I realized this test was expired but a digital pregnancy test so I took it anyway and said pregnant immediately. I messaged my boyfriend Matt while he was at work and started sending him pictures of the pregnancy test. We were both a little shocked but very excited that we were going to have a baby!! We had set up the doctors appointments and went to our first ultrasound and heard our baby’s heartbeat. It was amazing this feeling you get, deep in your soul just makes things feel complete. We were going to be parents and it was a scary, but exciting thought that we were going to start a family.

After my first appointment with the midwives they did a regular blood test like they always do with most pregnancies, a few weeks later I got a call from their office telling me that they had found antibodies in my blood screen and needed me to do another test at my next appointment. I of course was concerned and had lots of questions as to what this could mean, but never really got any answers from my online research that would make any sense. When I went back to the doctors I was around 12 weeks pregnant. The midwives had told us the second blood test came back normal and could have just been a simple mix up at the lab we let out a sigh of relief. Then it was time to hear my little ones heartbeat (my favorite part of the appointment) and she was unable to find it. Matt and I were starting to freaked out again after the blood test scare and they sent us to the emergency clinic to have an ultrasound done since they didn’t have a machine in there office. So a bit panicked and a full bladder they found our baby just kicking around like crazy and then finally another sigh of relief as we watched her bouncing from one side to the other. Little did we know this was only the beginning of our roller coaster ride.

Everything had been going smooth like a normal pregnancy and at my 16 week check up we decided to refuse the down syndrome blood test, due to the scare from the previous blood test. Around my 20 week ultrasound we were so excited we were finally going to find out if we were having a boy or a girl with family all waiting to receive our call about the gender. We found out we were having a girl, to be honest I thought the baby was a boy from all the old wives tales and even had a dream we were having a boy so I was a little disappointed at first ,but then came around to the idea of pink and dressing my little girl up with bows. We went back to the midwives a few days after the ultrasound and they said the ultrasound tech had discovered that the baby only had a 2 vessel umbilical cord (normal is 3) and she had also found 2 choroid plexus cysts on her brain. Not really understanding what all this meant, she explained they are soft markers for downs syndrome so they wanted to go ahead and do the blood test we had originally refused and sent us to see a specialist for a level 2 ultrasound.

At around 20 weeks and 5 days we had our first appointment with the perinatologist we walked in to do our ultrasound first and got a lot of really good pictures of our little girl moving around and playing with her toes. The doctor finally came in to review the results of the blood test and the ultrasound with us. First he said the blood test came back with a 1 in 19% chance of this baby having trisomy 18 (this was the first I haver ever heard of it) which seemed pretty scary to me. He then went through the ultrasound pictures with us showing us that one of the cysts had already dissolved and she had no other markers they could see at that time and apparently the 2 vessel cord was something fairly common and usually not to big of a concern, they just wanted to monitor growth a little closer. I then asked what he thought the chances of my baby having this trisomy 18 would be, and he said “oh well with your age and from what I have seen on the ultrasound today about 1 in 34000”. So at this point Matt and I were feeling a little better, the doctor then scheduled just one more follow up appointment in 1 month to double check markers and measure her growth.

One month later at around 25 weeks we went back to the specialist ready to do another ultrasound of our little one, again watching her bounce around on the screen. We started to think that she didn’t really like ultrasounds because she kept kicking right where the tech was pushing down and hiding her face with her hands. The doctor came in and said “well looks like the other cyst has now dissolved as well however she is now measuring about a week behind, and I am also a bit concerned we still have had no luck seeing her stomach bubble”. So he then recommended that we take the next step and take a test called maternit21 blood test because it has a positive or negative result and is about 98% accurate. We decided to do the blood test but was told it could take at least 3 weeks for the results. Well I think it was about a week and a half later when I got a call from the doctor while I was at work so I went to an empty desk with a pen and paper. The doctor said “the test results came back and they are positive for trisomy 18, I would like for you and Matt to come into the office to discuss the results a little further and also talk about some options we have available”. To be honest at that point everything seemed like a blur and I got off the phone walked over to my manager and just lost it the tears had started flowing, as I tried to mutter out a few words he knew I needed to go home for the day. I explained to him and another manager that with all the research I had been doing on trisomy 18 my daughter would not survive if this test was accurate.

I started doing a lot more research on trisomy 18 and the blood test I took to see if anyone has had a false positive result, and then got my hopes up and decided that maybe it was wrong because she didn’t have any of the physical markers in the ultrasound. Some of the markers included heart defects, cleft lip, clenched fists, strawberry shaped head, and club feet. When my boyfriend and I went to the specialist a few days later we talked about doing an amniosis to confirm the blood test and also other options such as terminating my pregnancy. I thought really?? Terminate my pregnancy at 28 weeks are you crazy!! There are babies that are born before 28 weeks ard turn out to be just fine that is absolutely out of the question. The amniocentesis scared me because I thought what if we do this test and it comes back positive?? I will totally lose all hope that my baby would be okay. I just couldn’t bring myself to do that besides the big needle going into my belly freaked me out to be honest.

We tried to stay positive and continued with our everyday lives, with all of this on our mind we had switched from the midwives to an actual OBGYN and then had our first appointment with her. At my first appointment we were very shocked to hear her say “I am so sorry to hear of your baby’s diagnosis of trisomy 18”. My mind went to diagnosis? What? it was only a blood test! I didn’t do the amnio I don’t have a confirmed diagnosis. At this time she measured my belly which was now measuring at 37 weeks when I was only 30-31 weeks pregnant the extra fluid was definitely obvious at this point.

Then the same week we went back to the specialist to do another ultrasound and started finding more markers on baby, still no visible stomach bubble so at this point we figured her stomach was not connected to her esophagus(this would explain the extra amniotic fluid), her growth was now closer to 1 month behind, also found one of the chambers in her heart had a thicker wall than the other chambers which was preventing the valve from closing all the way so blood was actually going back into her heart instead of being pushed out into the lungs. We also discovered that the cerebellum part of her brain was not connected, which controls all of our motor functions. My positive outlook on the situation was fading pretty quickly since all of these problems are very common in babies that have trisomy 18. The specialist started talking about how I would soon go into early labor or would go to an appointment one day and there would be no heartbeat. He also suggested that we needed to think about a birth plan and what we wanted them to do in terms of helping Aria if she were to be born alive, and if she died what we wanted in place for that as well. These are things we never would have imagined having to decide for our child. We should have been planning a baby shower and setting up a crib but instead we have to decide whether to have our daughter cremated or buried.

Then there were even more changes such as switching to a new doctor ,one that could deliver our baby in a much better hospital with one of the best NICU around who have experienced births of babies with trisomy problems. So we set up an appointment with a head nurse and doctor of the NICU at the hospital where we asked my boyfriends mom to attend because she is also a nurse and for more support we also asked his sister to be there as well. Our last specialist appointment was just a few hours before our meeting at the hospital so my boyfriend his mom and his sister were all there watching the screen. The doctor explained to them that all of Aria’s internal problems were unfortunately incompatible with life. We all had a good break down after the appointment because this was the first time it all really started to sink in. I told my boyfriends mom “this is all so hard to accept because I can feel her moving around I know she is alive and to know she isn’t going to live is tearing me apart, what hurts the most is knowing there is nothing I can do to protect her like a mother should be able to protect their children”. After I said these words I looked at my soon to be mother in law and saw the tears rolling down her face and then realized how hard this has to be on her as well seeing her son and me so hurt and faced with all of this and there is nothing she can do to protect us either. We all had this empty and hopeless feeling deep inside our souls. When we went to our appointment at the hospital they basically asked us what our wishes were for our birth plan and we decided that if Aria is born alive that we do not want to put her through any pain and we don’t want to see her suffer. We wanted to keep it simple and just show her as much love as we could for the amount of time we might get with her. If she were to live longer than just the few minutes that they expected then we would want her to get a feeding tube directly into her stomach and keep her as comfortable as possible.

A couple weeks later my mom and grandma came down for a visit with us as we were quickly approaching the end of the pregnancy. We had opted to not do a baby shower as we felt it would only make things more difficult,so my mom wanted to take us to have a 3d ultrasound of Aria that way we could have more pictures to treasure because this would be our only chance to get them. At the ultrasound we had explained to the ultrasound tech that we knew our baby had medical problems and that we were not looking for a diagnosis. We also let him know that yes my doctor was aware of the medical conditions the baby has, we just wanted the pictures for us and for our memories. Aria wasn’t so active on this Saturday I had even drank some caffeine so she would be a little more active like she usually was with ultrasounds. But she just wanted to stay curled up with her hands by her face sleeping. At least we were able to get some really amazing pictures of her and could even see her curly hair just like her daddy and her slightly opening one eye like she was getting irritated with us shaking my belly.

The weekend went by pretty good and we even went swimming at the hotel my mom was staying at on Monday night and the baby started moving around like crazy. I even enjoyed all the shocked looks people were giving me in my two piece swimming suit and could hear them mumble comments on how huge my belly was. Oh and just a little side note I did not float! I wanted to be able to float but no my big belly (that was now measuring around 38-40 weeks) just wanted to sink. The next morning I dropped Matt off at work and was getting ready for my first doctor’s appointment with a brand new doctor. My mom decided to stay so she could go with me to help ask questions and didn’t want me to meet a new doctor all by myself since Matt was unable to get that day off work (in all fairness he had taken a lot of time off work with all the doctors appointments we had been to). It was a nice warm morning and my mom and grandmother met at my apartment where we decided instead of taking two cars I would just drive then I would bring them back to her car after the appointment so she could just head back home to Wyoming from there.

We went to the doctor’s office and did my urine sample as usual, then into the examination room with the nurse to take my blood pressure and find baby’s heartbeat. The nurse wasn’t having any luck so she decided to just send in the doctor. Well at this point I wasn’t really concerned because finding her heartbeat had proved to be more difficult with all the extra fluid in the most recent appointments and I had just felt her kicking me in the ribs on the drive to the doctors. We spoke with the doctor to catch him up on the past 33 weeks of my pregnancy and get him on bored with my birth plan. I felt so relieved to have a doctor that had delivered other babies with trisomy 18 and was very understanding to how I felt. He then decided to try and find the baby’s heartbeat and it seemed like forever went by but probably only a few min, then finally we heard two short quick heartbeats then it was gone. He decided to just do a quick ultrasound when I asked if the heartbeats were mine or the baby’s, he said “definitely the baby’s because it was to loud and fast to be yours”. We went into the ultrasound room and the doctor handed me and my mother off to the ultrasound tech when she started looking at the baby I started to sense that something was wrong.The ultrasound tech kept moving the handle around my belly and highlighting the blue and red blood flow that was now fading away to just blue. After a few min of her moving it around the doctor walked back in the room and the ultrasound tech just gave him a look that I can not explain but then he looked at me with the same blank look. The ultrasound tech then started to say with a compassionate voice“ Sabrena this is what we are looking at, here is the baby’s head and here is her chest and you see right here is where her heart is….” I looked at the screen and her body was just completely still (hoping she would move any second). After a moment of silence I finally was able to mutter out “and it’s not moving” as a pit hit my throat I couldn’t say anything else nor did I have anything to say. The doctor then leaned over me and said “I am so sorry Sabrena but we now have to worry about you and your health, so in this situation we will induce your labor would you like to go to the hospital now?” In shock I wiped the goo off my belly with the tissue the tech handed me and sat up and said “no I need to call Matt and we need a hospital bag I wasn’t prepared for this”. The doctor looked up and said “okay I will have them schedule something for this evening and call you with what time you will need to be there please take a few min before you leave to process the news”. After the doctor and the ultrasound tech walked out of the room I looked over at my mother and when I saw the look of shock and heartbreak in her eyes we both  just started crying, every part of me was shaking, I was in shock and complete disbelief. After a moment I grabbed my phone to call Matt and he was at work so he didn’t answer but I needed him in that moment. I called again finally he picked up the phone right before going to voicemail and said “what is it I am really busy can’t talk long”. I said “well you’re going to have to talk to me for a minute” trying to spit the right words out between tears and my trembling voice said “Matt i’m at the doctor’s office and she is gone Matt she’s gone”….he said” what do you mean she is gone who?” I told him “well they couldn’t find her heartbeat so they did an ultrasound and she is gone babe and they are letting me go pack a bag because they are inducing labor tonight”. He then said after a minute of trying to process the news “okay well I am going to call my boss and I will see you at the house okay? I love you”..we hung up the phone. My mother and I grabbed our things and went to the waiting room where my grandmother sat in a chair reading her book. She looked up at us and realized something was wrong because we were crying, I leaned in and just hugged my grandma and said “gram the baby is gone”. We then headed to my apartment where we met up with Matt since his boss picked him up from the job site when he walked in we just hugged and cried our little girl was gone.

Later that Tuesday night of March 8th, 2016 we were all packed up and headed to the hospital to induce labor I was so scared I remember telling my mom that I would be less nervous going skydiving despite my fear of heights. We arrived right at 7:30 p.m. when we got to the room I noticed on the door they had a picture of a leaf with a water drop on it, I knew that was the symbol for everyone to know that this baby had died. After getting settled in the very large room with hardwood floors Matt’s mom arrived after her long drive from Aspen.She had rushed down as quickly as she could after hearing the news of the baby’s passing. I requested the first doctor to do an ultrasound before we started to induce labor that way everyone knew that Aria was for sure gone. The doctor gladly brought a small portable ultrasound machine with a squeaky wheel into the very silent labor and delivery room where Matt, his mother, my mother and his sister all gathered around the small screen to see our little girl’s lifeless body. We all knew she was gone and the doctor nodded with sympathy as she shut off the machine.

They used a medicine called sydatec to induce labor and said it could take up to 24 hours and that I could get the epidural whenever I felt the need. After a couple hours I did start to get contractions about every 15 minutes, but other then that we were all trying to get some rest. When the nurse came back in to take all my vitals she told me I could take a sleeping pill to help me sleep but Matt’s mom quickly said “umm I don’t think you should give her an ambion that is a pretty strong sleeping pill I think something as simple as a benadryl would be better”. The nurse agreed it would be better because it wouldn’t make me as drowsy so I took a benadryl, they also gave me some percocet for the pain since I didn’t need the epidural yet. Throughout the night I would wake up sweating but cold and my whole body was shaking like a leaf and the nurse said it’s just a side effect of the medicine used to induce labor.

The next morning they checked my cervix and I was only dialated to 1cm so they wanted me to eat some breakfast before giving me anymore pain medicine because they didn’t want me to get sick. After eating I layed back in bed and went to sleep. I started having a weird dream where I was standing in an all white room, and this man was in front of me but I couldn’t see any facial features. The man said “Sabrena, you have a choice to make, you can either go through this door (which he pointed to one side of him but I didn’t see a door everything was just bright white) and be with your daughter or you can choose to go back this way to your family” (I looked back and down and could see Matt sleeping below me on his bed). I was a little confused as to what the man meant but looked up at him and said “well can I just see my daughter”? He said “no that’s not an option you can go this way and and be with her but that is where you will stay, or you can go back with your family. It will be painful but you will be able to have more children and live a happy life and you will get to see your daughter again one day”. I now understood what he meant but it was a very difficult choice because of course I wanted to be with my daughter but I also knew that I couldn’t do that to my family we already lost Aria they couldn’t lose me too. He then said “this is your choice and only you can make it but if you want to stay when you wake up you need to ask for your nurse”, I said “okay I feel like my daughter is okay and that she would want me to continue my life”, then he said “okay “and I woke up. I sat straight up almost as if my soul had been shot back into my body looked directly at Matt’s mom across the room and said “I need the nurse!” I must not of looked to good because both her and Matt came straight to my bed and touched me then his mom went running out of the room to get the nurse, and Matt started pressing the nurse call button and said I felt like my skin was on fire. The nurse came in and took my temperature which was 104.7 and my heart rate was over 130, she ran and got the doctor with fear that I was getting an infection and might need an emergency c section. The doctor came in and said that it was just an allergic reaction to the medicine they were giving me to induce labor and they weren’t going to give me that medicine anymore. The only reason we didn’t catch on to me having a reaction is because the night before I had taken a benadryl to help me sleep instead of the ambion. To this day I believe that if I would of taken the sleeping pill instead of the benadryl I would’ve died. They brought my fever down with some tylenol and let me get some more rest.

After being in labor for a little over 24 hours the doctor came in to check my cervix which was now only dialated to 2 1/2 cm but 80% effaced he decided to break my water. Within 10-20 min of him breaking my water full labor started to kick in and everyone is right it is a pain you can not imagine and it is unlike anything you’ve ever felt before. After a few more min I just couldn’t take it I was ready for my epidural but the nurse said I had to get at least 20 min of iv fluids first, but she gave me a shot of demerol and it didn’t hardly even touch the pain so she gave me another shot and finally I was able to lay there and breath with my contractions which by the way I wasn’t having a break in between contractions just a constant contraction on the screen and it wouldn’t let go. Finally in walked the anesthesiologist to give me my epidural. He said it would feel like a bee sting but to be honest I didn’t feel a thing probably because my contraction had me preoccupied in pain. Once the epidural was in place and I was able to lay down I put my hand straight up in the air and said “SOLD!!”( I don’t know why I did this but I blame the demerol) then I said “that was the best decision I have ever made in my whole life! Why would anyone choose not to get an epidural”, at this point I was feeling much better. Finally we could all get some rest again.  

When the nurse came back an hour or so later to check my cervix baby was already dropped in the birth canal so everyone woke up and waited for the doctor to come in which was only a couple of minutes. Now I was getting extremely nervous like wow I am having this baby like right now, the doctor came in and set up in a matter of a few min and then told me to push, then after about 2 seconds told me to stop I guess I was pushing to hard. I had never had a baby before and I had an epidural so didn’t have a clue as to what I was doing but my body seemed to know just what to do. “One more little push Sabrena” so I pushed and then I heard a lot of water splashing on the hardwood floor and felt like a big balloon being totally deflated. Everyone looked over and said “WOW” and I looked at Matt since I had no idea what was going on and said “is she here”? He looked as pale as a ghost as he shook his head yes, then the doctor told me that the baby was blocking all the extra water in so when she was born it all came out. It was the most water any of them had ever seen I guess I should be glad that I didn’t see all of it coming out.  But within a few minutes the nurse brought me my precious baby girl in just a tiny little blanket, her body felt warm and everything was so still and quiet. As I looked down at her beautiful face I could see so much of Matt in her, also noticed her eyes were closed and her lips were absolutely perfect. Matt leaned in to get a look at our little girl and a trickle of blood came rolling out of her nose which made all his emotions sink in. I looked at her and thought I am so sorry baby girl this just isn’t fair. Aria’s little head was a little cone shaped from being in the birth canal so her hair was very matted down. I inspected and ran my hand down her little body and everything was perfect, I somewhat expected her color to be a little blue but she was pink just like a normal baby. When I looked up at the nurse she then said “Aria Lynn Teetzel was born March 10th at 12:22 a.m.” after 28 ½ hours of labor. With tears in my eyes I looked up at my mom and my trembling voice said “would you like to hold her?” She got tears in her eyes and shook her head yes so I passed Aria into her arms to hold her and take her back over to put her outfit on.

We had them take her tiny footprints and dress her in a little preemie outfit that had purple dots and a cute little owl on one side of the chest we had bought just before going to the hospital. The nurse brought in a tiny knitted white hat for her as well since the newborn size hat we brought was to big for her. Then they measured her height and weight, she weighed 2 pounds and 8.4 oz she was 15 ½ inches long, her weight was very small considering I had her at 34 weeks.They wrapped her in a soft fuzzy pink blanket we brought for her before placing her back in my arms. After getting her dressed and wrapped in a blanket Matt was ready to hold his daughter for the first and one of the only times he would ever get to. As we each held her and gave her kisses on her cheeks and rocked her in the chair we were just treasuring every minute we could have with her and show her all the love that we could.

We then had to decide on what funeral home to send her to and had decided on cremation, we also took pictures with a photographer from Now I Lay Me Down to Sleep they do free pictures but accept donations for families who have lost their babies. After 12 hours it was time for us to say our final goodbyes. The specialist came in the room so that he could insure me they would have a tissue sample test done on Aria and a blood sample from me to get a confirmation that she had trisomy 18. He said the chances of it ever happening again was less than 1% so it was not genetic. (It took three weeks for the final results to come in and confirm what we already knew, she had trisomy 18). As I handed my precious baby girl to the nurse I leaned down and kissed her head then said “Mommy loves you baby girl, I will miss you”. We walked out of the hospital empty handed and heartbroken.

We then went home and on the following Monday I called the funeral home so we could go and pick out her urn from a catalog since baby urns are not usually kept in stock. Her urn is a pink brass cube with a cute teddy bear holding and smelling a daisy. We each got a necklace with her ashes in it. My necklace is a heart and I wear it everyday over my heart and take her with me everywhere I go.

We are now back to our regular lives but a piece of my soul died the day that my daughter died but I know that her soul is okay and at peace. There is a part of me that will always be with her and I am not completely the same as I was but I would never take a single moment back as painful as it is because she was beautiful and worth every second. I know that we have the best guardian angel there is. I don’t know where to go from here but what I do know is that I will live each and every day to it’s fullest not only for me but for my daughter because she didn’t get this opportunity at life. Some days are harder than others but each day does get a little easier, just need to keep your head up and stay positive because that is what our lost loved ones would want. I hope that my story will do some good because I felt like I needed to tell my story I don’t know if telling my story will help someone else out there or if maybe it was just for me and my healing process. Either way I am breaking the silence and telling the world my story of my beautiful daughter Aria.

  ~Sabrena Estes

P.S. If you have any questions you can email me at sabrenaestes@gmail.com

Please no negative comments, feel free to share our story to help reach out to others.