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Saturday, September 9, 2017

Trisomy 13- The Story of Eden Lynne

Mama's Organized Chaos: A Babywise Blog

The following story was sent to me by a first time mom. She found me through this blog, and as it turns out we gave birth to our daughters only one day apart. We walked this journey at the same time, yet didn't connect until after the fact. I feel a special closeness to Sarah and am forever grateful that we've been able to connect. Sarah had to say goodbye to her firstborn exactly one month ago today. Today I am honored to share her story. Eden Lynne is a very special girl with an amazing mother.

We found out we were expecting on April 4th, which was amazing because we had just experienced a miscarriage with our first pregnancy a month before. We were so happy, everything was falling into place. The timing would be perfect, have a winter baby and then start building our house in the spring. However, for some reason our perfect plans would be completely changed in a few short months.

On July 5th (my nephew’s first birthday!) I woke up after only a few hours of sleep (I am a night shift labor and delivery nurse and had been at work until 5am), to go to a dental appointment for a routine cleaning. I remember texting my sister asking her if I needed to let the hygienist know that I was pregnant to avoid getting x-rays. I remember being nervous when I actually told the hygienist because my husband and I had decided to wait until after our anatomy scan to announce our pregnancy (we had told our parents, a few family members, and a couple of close friends all of whom were extremely excited for us). At this point I was 16 weeks and 3 days.

After my teeth cleaning I was able to go home and take a quick nap before heading to my routine OB appointment. This was the first appointment my husband didn't take off work to go with me. I didn’t think he needed to since all that was going to happen at this appointment was check my vitals and a doppler of the heartbeat.

My appointment was with one of the midwives that I work with, she asked how I was doing and then proceeded to doppler for the heartbeat. I told her how excited we were because we were going to a 3D ultrasound that Friday and we were going to find out the gender of the baby. She had told me before she even started that she always had troubles finding the heartbeat at 16 weeks, so when she was unable to find the heartbeat I wasn’t nervous. Plus I had borrowed the doppler at work the night before and found the heartbeat myself. The midwife went to get another doppler, but still had issues finding the heartbeat. She told me that I would just have to get a quick ultrasound to make sure everything was ok.


We moved to the ultrasound room and the technician found the heart beating right away at 137 bpm, just where is should be! The midwife left the room, but the technician continued to scan. I didn’t care because it meant that I got to see my baby. I did feel a little guilty because my husband wasn’t there to see it. The tech showed me an area on the base of the spine that looked like a pocket of fluid, she told me she would mention it to the midwife and the doctor. It didn’t concern me, for some reason I thought that it would just absorb back into the body. While she was scanning, I caught a glimpse of the hand, and I said it looked like the baby had 6 fingers (my husband and I had noticed this at 12 weeks when we did the nuchal translucency ultrasound), she just said that the hand was so small it was too hard to tell. Once the scan was done, the tech left the room to go talk to the doctor and midwife. I just sat on the table happily looking at the printed images of our baby she had given me.
The midwife came back in the room, and I instantly knew something was wrong. She didn’t have a smile on her face when she walked in. To be honest, most of what comes next is a bit of a blur to me because there was so much to take in. She talked about the fluid on the base of the spine and that the baby had 6 digits on each hand. She also had mentioned that it looked like there may be something wrong with the baby’s brain and that the baby was measuring much smaller than it should be. She kept saying that the baby was very sick and it looked like there were many chromosomal abnormalities. She told me it would be best if I had an appointment with a Maternal Fetal Medicine doctor. She also told me it would be a good idea to cancel my 3D ultrasound appointment. I just sat there in shock not saying anything. She asked if I wanted to call my husband, and I said no I just wanted to go home. She gave me a hug and that was where I lost it. I have never been much of a crier, but I couldn’t help it the tears just started coming. After she left, I continued to sit there not knowing what to do.

As I left the office and got into my car, I sent a text to my husband asking him to come home early from work. He said he would try to but didn’t know if he could. So I made the decision to call him (I don’t like talking on the phone), I don’t think I got more than 2 words out because I couldn’t stop crying, but he must have understood enough because he pulled into the driveway just after I had gotten back from the office. We stood in the kitchen hugging, as I tried to tell him what I had just learned at my appointment. How could our perfect little baby have so much wrong with it? Neither of us could understand what was going on or why. Looking back, the midwife not being able to doppler the heartbeat was somewhat of a blessing in disguise. If she would have found the heartbeat, we would have gone to our 3D ultrasound on Friday and we would have see these abnormalities in a different setting with a stranger as the sonographer, with both our parents and my sister watching. I could not imagine how horrible that would have been. I thank God for not putting my husband and myself through that, He was definitely looking out for us.

My mom had sent me a text earlier asking how my appointment had gone. How was I going to tell my mom? I couldn’t just ignore the message and I couldn’t tell her everything was fine. So I told her how it went. I also told her not to call me, because we all know that is the first thing a mom would do after reading that their daughter had just found out there was something wrong with their baby, and I knew that if she were to call me, I would have just sat there crying with a phone to my ear not saying anything.

My husband and I had just finished dinner, McDonald’s because neither of us were in the mood to cook, when someone rang our doorbell. Of course it was my parents. They live an hour and a half away, but they drove up just to make sure we were ok. My husband’s parents showed up the next night after we told them. We are beyond grateful for our parents and how supportive they have been during this tough time.

I had to call off work the next night, there was no way I could be around happy new parents and babies when I had no idea what was going on with my own baby. I made the mistake of googling the findings from the ultrasound. I diagnosed our baby with spina bifida, which could be surgically fixed (to an extent) and the baby could grow up and a live an almost normal life, depending on how severe it was. As for the six fingers on each hand, we just joked that the baby would be really good at sports (I found out that I tend to make jokes when I am in an upsetting situation). But when would combine the spina bifida and the six fingers and the brain abnormalities on a google search, you get Trisomy 13. This diagnosis was one that I certainly hoped could not be true.

On July 8th, I was a bridesmaid in one of my best friend’s wedding. Somehow my husband and I managed to put a smile on our faces and act like there was nothing wrong. None of our friends at this wedding had any idea we were even trying to have a baby, let alone were almost halfway through pregnancy. However, on the 9th, we celebrated my nephew’s first birthday. This day was a little harder because some of my family knew that we were expecting. I didn’t want to face them, but I also didn’t want to let my sister down by not showing up to her son’s birthday (even though I know 100% she would have understood if we weren’t there). We decided to go, but we isolated ourselves and didn’t interact too much with my family. My mom had gone around telling everyone that there may be something wrong with the baby, which I was thankful for because I didn’t want to have to be the one to tell people. I didn’t want to have to relive my appointment time after time by letting people know.

On our way back from my sister’s house I sent a message to my doctor asking if there was anything I could do to find out more information about what was going on. He called me and told me that he can order genetic blood work for myself and my husband. I asked about an amniocentesis and he said he could set one up for me as well. I am so thankful that I have such a close relationship with my doctor since I have worked along side him for the past year and a half. Not many doctors would appreciate a patient texting them a suppertime on a Sunday, but he was so concerned about me and my husband it didn’t bother him what time or day it was.

I don’t remember why, but my husband didn’t have to go to work on July 10th, so we went to the hospital to get our blood drawn for genetic testing. We sat in the waiting room for about an hour while they tried to find our orders for the blood work. It was lunch time and my OB office wasn’t open so they couldn’t call to have them send the orders over. We went home, and I called the office myself and they confirmed that the orders were in and they had even called the lab to make sure they could see the orders, and they could. We went back to the hospital, and again they said the orders were not there. At this point I was frustrated and tired from not getting much sleep the past week, I asked them to call the lab to see if they had the orders. Thankfully they did and we had our blood drawn, all we had left to do now was wait a week or two for the results. I am not a very patient person when it comes to waiting to find out things like this.

Being a nurse, I only work 3 nights a week, thankfully I had about 8 days off in a row before I had to head back to work. My first night back was extremely hard. Just getting shift report from  the dayshift nurse made me cry. We were extremely busy that night. About halfway through my shift, the charge nurse told me to go home. She didn’t know what was going on, but she could just tell that there was something wrong and that I needed to be home.

July 17th (18 weeks and 1 day) was the day of my amniocentesis. I wasn’t nervous at all about the amnio procedure itself, but I did not want to see my baby on the monitor in front of me. I didn’t want to get attached to someone that deep down I knew I wasn’t going to meet. That sounds absolutely horrible, but that is just how I felt. I couldn’t keep my eyes closed, as soon as the ultrasound tech put the gel on my belly my eyes instantly went to the monitor. There was our baby. Our perfect little baby. I tried my best to hold back the tears, but the tech listened to the heartbeat, it was as strong as ever, and I felt the tears coming. My husband was sitting beside me looking at the same monitor with the images of our little baby wiggling around.

He has been so strong and positive throughout this entire process. He has such strong faith and believes the best in things. I don’t know if it is the difference between my nurse brain and his engineer brain, but I see things for the worse. I have seen parents lose their babies before while working in labor and delivery, I knew we weren’t excluded from this no matter how hard we prayed.

My doctor came in and the tears that had gone away came rushing right back. This was the first time he had met my husband, I couldn’t wait for my husband to meet him, but I wish it hadn’t been under these circumstances. The amnio procedure was quick and essentially pain free, considering I just had a 3 inch needle pierce my lower abdomen and uterus. I was thankful for it to be done, but again I didn't want to wait two weeks for the results. When the tech did another ultrasound after the procedure, I asked her if she was able to tell the gender of the baby. My husband didn’t want to know, but I needed to know. I don’t know what it was, but there was something in me that had to find out. She scanned between the baby's legs and said she couldn’t confirm it 100% but she was almost certain it was a girl. We were going to have a baby girl. I always wanted our first child to be a boy, but everything changed when she said it was a girl.

Before leaving I asked the nurse if our genetic results had come in. She went to check, and when she came back she said they didn’t run the tests. The blood had been sent to the Mayo Clinic, and they didn’t run the tests because they didn’t think the doctor had ordered the correct tests. Why didn’t they call and confirm what tests were supposed to be ran, instead of waiting a week and doing nothing? I was extremely upset by this. I wanted some answers and I was still in the blue.

My appointment with the Maternal Fetal Medicine doctor and genetic counselor was set up for August 1st. Which put me in a sticky situation. This date would put me at 20 weeks and 2 days. If for some reason my husband and I had decided we wanted to terminate this pregnancy, we would have to do it before our appointment at MFM. Earlier this year, Ohio passed a law banning abortions after 20 weeks gestation, regardless of a fatal diagnosis for the baby. Never in a million years would I have even considered abortion as an option. I have always had a strong love for babies and could never imagine ending the life of such an innocent human. However, if our baby had Trisomy 13, a fatal chromosomal disorder, termination wouldn't have been as hard of a decision. The problem was, we wouldn’t have known the diagnosis before 20 weeks. My husband and I couldn’t possibly make the choice to end the life of our baby based off of a few issues on the ultrasound. We needed something more concrete.

I called MFM and asked if it were possible to move my appointment to an earlier date. Even if we didn’t have the results of the amnio, these doctors were more familiar with cases like this and would be able to give us more insight on what was really going on with our baby. The woman I spoke to on the phone was not friendly in the slightest bit, it frustrated me to the point that I started crying. She went to talk to the doctor we would be seeing, and he refused to see me any sooner, because he wanted to see me after the results of my amnio were in. So we were stuck with having to wait.

On July 20th my OB office called me and told me our genetic test results were in. My husband and I both had completely normal genetic blood work. This was such a relief! Everything that was happening with our little girl was a “fluke” (for lack of better words). These results may not mean much to others, but to us it meant that if we were to try to get pregnant again, we weren't at any higher of a risk to have another baby with genetic abnormalities.

I had to go to work later that night, and it was a little easier knowing that my husband and I were “genetically normal.” A couple of the nurses were texting and joking with my OB doctor, so I sent him a text asking if he could call me because I had a few questions. He called and talked to me for about a half hour. I asked him what he thought was going on with the baby. He said he didn’t know for sure because he was not a geneticist. I asked if he knew what was all seen on the ultrasounds. I wasn’t prepared to hear what he had to say. I already knew about the spinal cord, hands, and brain; but he said there was no nasal bone, many heart defects, and something was wrong with the placenta/umbilical cord. I don’t know if hearing all of this made things better or worse for me. He told me it didn't look like this baby would survive much longer, and if she did, it was highly unlikely that she would survive labor.

At some point in the next week, my husband and I sat down and talked about our options. We had one week to make a decision on whether or not to terminate the pregnancy, if that was what we wanted to do. In my mind, I knew that was what would be best for her, but I couldn’t imagine going to a clinic and having a D&E done. If I did, I wouldn’t be able to hold our daughter. I wouldn’t be able to see her tiny little toes. I wouldn't be able to see the child my husband and I created. I knew that I didn't want our little girl to suffer, but I couldn’t do it. My husband was going to support me with whatever decision we made. We also decided on a name for her. Ever since I found out the baby was a girl, the name Eden had been stuck in my head. My husband liked it and I asked what he thought her middle name should be. He suggested Lynne (his middle name is Lynn and our first son will receive this as a middle name), I told him I was thinking Lynne as well. So we named our daughter Eden Lynne.

July 31st, a nurse from my OB office called with my amnio results. Trisomy 13. My heart shattered. I knew this is what she was going to say, but I didn’t want it to be reality.

We drove up to my husband’s parent’s house the night before our appointment with MFM because they live closer to where our appointment was, and it was an early morning appointment. There must have been so much on our minds because the night before, I left my purse at our house. My husband drove 45 minutes back to our house to pick it up, when he came back to his parents he was very mad and said he left the purse at home. I thought he was kidding, but he went to our house, made some coffee and drove back to his parents sans purse. After dinner he and his dad drove back to our house and came back with my purse.

August 1st, my in-laws drove us to MFM and my parents met us in the parking garage. We all walked into the office together, there were so many happy pregnant women and children there, I felt so out of place. I was 20 weeks and didn’t even look like I was pregnant. After waiting what seemed like forever, my husband and I went back for an ultrasound. After scanning for a while, the sonographer asked me to get up and move around to try to get the baby to reposition so she could get more pictures. At this point our parents came into the room so they could see the ultrasound and hear what the sonographer had to say. It was very emotional, but I was doing my best to hold my composure. The sonographer was so kind and made me feel at ease.

After we were done with the ultrasound we all went to a small empty office room to wait for the genetic counselor to talk to us. She was the most impersonal person I have ever met. I don’t even remember what she had to say. I’m sure she answered all our questions and the questions our parents asked, but I kind of blocked her out. I already knew our baby wasn’t going to survive, so why should I listen to some stranger tell me what I already knew.

Next we met with the MFM doctor. He was very kind and intelligent. He went over all the abnormalities. The spine, the brain, the heart, the cord/placenta; there were a few more new ones. He said there was something wrong with the abdomen but it was hard to tell on the ultrasound. He said it looked like the intestines may be outside of the abdominal wall. He also said she had a severe cleft lip and palate that looked like it went all the way up to the brain.

I can still hear him telling me that if we wanted to hold a living baby we would have to have a c-section around Halloween (my due date was 12/17). He didn’t know how long she would live or if she would even live at all. I definitely didn’t want to have a major surgery not knowing if I would even have a living child in the end. He said he thought it was very unlikely that she would survive labor, which is exactly what my doctor had told me. We left that appointment with the answers we didn’t want to hear, but knew we were going to get.

The next week was a long one for me. I gradually started telling a few of my coworkers that I was pregnant, up to this point there were only two that knew, and they were both on maternity leave now. We were going to publicly announce our pregnancy the following week after our anatomy scan. I wanted to be able to talk to coworkers about what I was going through just incase they would be taking care of me as a patient soon.

August 8th, I had a typical OB appointment with my doctor. We dopplered the heartbeat, which was perfect. He checked my cervix which was a “dimple” and said he thought my water may be leaking, sure enough it was. So this was it. Eden decided she wanted to come on her own terms. We were sent to labor and delivery to be induced that evening. We went home, packed a bag, gave kisses to our dogs and headed to the hospital.

Labor and delivery is on the 3rd floor, I was doing fine the ride to the hospital and the elevator ride to the floor. As soon as the locked double doors opened, so did the tears. Everyone knew I was coming and that just made it even harder. The charge nurse took us to our room, thankfully they didn’t put me in the room where we typically put fetal demises (its more secluded and quieter for the families), but I know what that room is usually used for. The nurse taking care of me that evening was the nurse who trained me, it was very comforting having her has my nurse. She started my IV and gave me my first dose of oral cytotec around 3pm. The unit was extremely busy and my doctor was stuck at another hospital with three patients in labor.

Shift change was at 5pm and the nurse coming on was one of the nurses I had previously told about what was going on, it was good that I didn't have to explain our situation again. My mom and my mother in law came to our house to take care of the dogs and then to the hospital for a while. It was nice to have company, even though our moms just talked to each other. I kind of liked listening to their conversations that had nothing to do with the baby, it kept my mind off of things. I had a few more doses of cytotec at 7pm, 11pm, and 3am. I started to feel a little crampy after the 11pm dose, but it was nothing unbearable. I didn’t get much sleep, mainly because the IV pump was loud, being the nurse I am, I shut it off around 2:30am so I could get some sleep.

The next shift came on at 5am, and I had my preceptor as my nurse again. I had another dose of oral cytotec around 7am. I was still doing fine with the contractions. They were becoming a little more strong, but I was handling them well. I did ask for a dose of IV pain medication prior to when the doctor was coming because he was going to give me my first dose of vaginal cytotec. My nurse gave me the dose about 30 minutes prior to when my doctor was coming, and it knocked me out instantly. I am not one who typically takes pain medicine, so this was a new experience for me. I could feel my breathing slow down and become more shallow, my heart started to race, and I became oddly hot. I mainly took the medication to fog my mind. So I wouldn’t remember what was happening around me. Apparently the doctor and my manager came in to check on me, but they didn’t bother my because I was finally sleeping. I had my first dose of vaginal cytotec around 11am. Things definitely started changing after that. The contractions got stronger and when I went up to use the restroom I noticed blood and then a huge blood clot. It freaked me out so much, I should have known this was going to happen but being a patient and being a nurse are two completely different things. My nurse reassured me that that was normal and everything was fine. I continued to have a dose of pain medicine with every dose of cytotec, it helped me sleep through the contractions.

Night shift was here now. The nurse taking care of me this night was a nurse I went to nursing school with. She has such a kind heart, I am almost certain having me as a patient was harder on her than it was on me. I had had weeks to prepare for this day, I knew what was coming, she had just found out that I was even pregnant, let alone going to lose my baby. I had one more dose of cytotec around 7pm. Most of what happens next is hard to recall. At some point I called the nurse in because I felt sick and hot. It had been over 12 hours since the IV had been shut off, so I asked her to start that back for me (I thought maybe I was a little dehydrated, I had been sleeping too much to drink water) and for some zofran and more pain medicine. The pain was horrible at this point, it felt like he contractions wouldn’t stop. I remember falling asleep and then all of a sudden I woke up and felt like I had to urinate. I was afraid to get out of bed to use the bathroom because I thought the baby would just fall out. She was measuring four weeks behind what she should have been, I knew I didn’t have to be dilated much for her to come. I asked the nurse to get me a bedpan, but for some reason once I was on it, I didn’t want to use it. I don’t remember if I asked for the doctor to come in or if he just came in on his own. He checked my cervix and the next thing I know the pain is gone. Eden Lynne was born on August 9th at 8:57pm. I felt such relief, not from the pain, but from knowing she did not have to suffer anymore.

I didn’t want to hold Eden. I didn’t want to see our baby. I knew she had a lot of abnormalities, and I wanted to remember her has the perfect baby I had pictured in my mind. My mom was the only one who saw her. My husband’s parents wanted to see her feet, they were the only part of her that was “normal.” Our parents stayed with us for a few hours after I delivered, then left so my husband and I could grieve on our own. My nurse kept asking if I was sure I didn’t want to see her, and I didn’t. I asked her if she would be able to get footprints and possibly a mold of her feet for us. Eden weighed 7 ounces, was 8.5 inches long, and her feet were the tiniest, sweetest little feet.

The next day, the day shift nurse said I could go home whenever we wanted. The doctor had already signed my discharge paperwork. We left around 8am. My mom was at our house taking care of the dogs. She was baking me my favorite cooke bars and making us lunch and supper for the next few days. She went home later that evening. Before going to bed that night, it finally hit me. I hadn’t cried the entire time at the hospital, other than when I first got there, I was just so relived for everything to be over. I didn’t have to put my body through carrying a baby to term, and I didn’t have to put my daughter through any more pain. We had given birth to our daughter and we never held her. I felt like the worst mother in the world. How could I not want to hold my own baby? I asked my husband if he could call the funeral home to leave a message asking if we could come see her in the morning, surprisingly someone answered at 10pm. They said they would call us back first thing in the morning.

The funeral home called around 8am, and we went to go see Eden. It was an overcast day and just felt like and overall crappy weather kind of day, very fitting for how we were feeling. As soon as I got out of the car I started crying, for someone who never cries, I sure have cried a lot the past few weeks, and I’m sure its not going to stop anytime soon. They led us to a big room, all the way at the far wall was a tiny baby wrapped in a pink blanket. I sat in the chair beside her and the lady handed Eden to me. It felt like I was holding air, she was so small. But she was perfect! She may not have been chromosomally perfect, and yes she had a lot of defects, but she was our daughter and I didn't see all those defects, I saw our Eden. I held her for a while and then I asked my husband if he wanted to see her, he was a little hesitant but ended up wanting to hold her too. It was probably one of the hardest things we have ever had to do. I didn't want to put her down. I wanted to hold her forever.

It’s been 9 days since I’ve given birth, and each day is getting a little easier for us. We will never understand why we were chosen to be parents to our little Eden for such a short time, but we know there is a reason for all of this.

Please see the Trisomy 13 page for more trisomy 13 journeys, resources, and more. 


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Hey guys! I'm Katrina (aka Mama)! I love country music, snuggling on the couch with our dog, and playing with our daughter. I am a fibro warrior, a former chemistry teacher, I love watching college football (go aggies!), and I love being a SAHM. Connect with me on Facebook for more adventures!

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