Written by: Heather Harty
Photo Cred: Krysthol Davis Photography
If you are reading this you may be going through something traumatic, something so unimaginable that you may not know how to take a single step forward, something similar to what I’ve gone through. My name is Heather and I can say I unfortunately have been through the ultimate nightmare. The one thing I hope you understand from our story is that you are not alone. There are many people out there with a similar story and you should find those people and hold on tight. Your feelings are normal and you should never let anyone make you feel like you cannot validate or express your feelings. This will be the toughest ride of your life, but hold on tight, because there is support out there and you can get through it one day at a time. Even though it is tough right now, know that you too can find the good in an impossible situation. This may not seem possible and may not make sense to you right now, but have faith. YOU got this! Here is our story.
Jeremy and I found out we were pregnant with our fourth child. We have a blended family; his, mine and ours. This was a surprise pregnancy, but of course we were very excited. We had either sold all of our baby stuff or items were outdated so I started buying new items for our newest addition. Our house was starting to look and feel like we were soon going to have a baby. We couldn’t wait to meet him/her. We had been talking about names, how we were going to decorate the nursery, and had made the decision to have our baby’s gender be a surprise when he/she was born. We attended our ultrasound appointment, and as any expecting parents, were excited to see our little one for the first time. It was then, at 22 weeks, that our world was rocked.
Jeremy and I went in for our 22 week routine ultrasound. Prior to the 22 week ultrasound, we had an ultrasound at nine weeks and everything appeared to be “normal”. As soon as the ultrasound tech placed the wand on me, I knew instantly that something was wrong. There, on our sweet baby, was a large tumor the size of the baby along with a lot of fluid in the baby’s abdomen and chest. The ultrasound tech had never seen what we were seeing on the screen before. I began to cry and cry. We went down to see my doctor, who is AMAZING, and her office was already on the phone with St. Mary’s Hospital in Madison making me appointments for the next day. I sat in the doctor’s office, unable to stop crying. The nurse cried with me and my doctor sat with her arm around me to give me comfort. They couldn’t tell me anything, as they were unsure of exactly what it was that we had seen on the ultrasound. I went home to “try” to sleep so I was rested for our trip to St. Mary’s in Madison right away the next morning. My mind went crazy all night long, making sleep impossible. Of course I tried to refrain myself from Google but, in this situation, that was impossible. I found some information that helped prepare me for what was going to happen the next day. I knew there were going to be a lot of questions thrown at us and tough decisions to be made but, ultimately, I knew my baby was not going to survive.
As we sat in St. Mary’s hospital waiting room, I looked around and wondered if all these other women were going through a situation like ours. I was scared. I thought I would be just a number to the medical staff and that they would throw us in a room until someone came to give us bad news. I’m happy to say I was wrong. These people truly cared and they treated me like royalty. I didn’t go down two floors to have labs taken. Instead, they came to me. Everything was all about me and making things as easy on me as possible.
I got into the ultrasound room and again began to cry. We were able to see the baby and mass on the ultrasound, just as we had the day before. I kindly asked the ultrasound tech if she had seen this before and she said “yes”. I was somewhat relieved that at least I wasn’t going to be on some medical show for my strange diagnosis, but I knew things were bad. The ultrasound didn’t last long because, with the condition our baby was in, there wasn’t a whole lot to see. Next came the heartbreaking news. The doctor came in, along with a genetic counselor, to tell us what was wrong with our baby. The baby had Cystic Hygroma, which created a large mass that was wrapped around our baby’s neck like a donut. Most of the mass was in the back of the neck. The mass was just as big as the baby, which would explain the pressure and pain I had been having during this pregnancy. The baby also has hydrops which is when fluid fills the baby’s whole body. In our case, the baby had the most severe case of hydrops. Several people had been making comments that they didn’t think I was getting big, well they were wrong. I was actually way bigger than I was supposed to be at 22 weeks due to the large mass on the baby and an enlarged uterus from the baby’s medical conditions. We were informed that both of these conditions were caused by some sort of chromosome abnormality. This is nothing that I did, or could have prevented. It was nobody’s fault. It happened at the time of conception. They proceeded to give us the news that I had already suspected. Our baby was going to die. With the fluid overload in the body, the heart would eventually stop. They gave the baby a zero percent chance of survival.
After receiving the horrific news, we had to start making the most difficult decisions of our lives. We were given the option to terminate the pregnancy, which would have resulted in us jumping through a lot of hoops due to laws governing later term pregnancies, or we could continue to carry the baby until it died. Once the baby’s heart stopped we would have to go to Madison to deliver our deceased baby. We chose the second option. I just could not bring myself to terminate the pregnancy, even with a zero percent chance of survival. I could feel the baby moving (more than a normal person at 22 weeks could because I had little to no amniotic fluid) and could I see the heartbeat. I thought to myself, how does someone handle this??
The next choice we had to make was to decide if we wanted genetic testing done to find out which chromosome abnormality the baby had. Some examples could have been Down’s, Edwards, Turners, and many more. We opted out of having an amniocentesis at this point but did have some blood work done that would tell us some things. For me, I wasn’t sure I really wanted to know. At this point, it didn’t matter what abnormality had caused this; the outcome was going to be the same. I could carry this baby for weeks or months before the baby’s heart would stop, there were so many unknowns.
Do you know that feeling when it hurts so much to know something but it gives you so much anxiety not to know? That’s how I felt when it came to finding out the diagnosis of our baby. My mind had been racing every which way but the thought of not knowing made me sick.
We were heading out for my weekly routine check when my phone rang. When I saw the number, my heart sank. It was my genetic counselor calling to give me the results of my lab work. I listened to him tell me my baby had Turner Syndrome. I had a sigh of relief but yet I wanted to cry. I then thought to myself, “Wait; only girls can get Turner’s!” He just told me I was having a girl (we have all boys)!! I actually had a moment of excitement. It didn’t matter what the sex was for our baby’s chance of survival but that part of the news wasn’t bad news that brought extra disappointment.
Turner Syndrome (TS) is a genetic condition that affects females only. It occurs when one of the two X chromosomes (one of the two sex chromosomes), normally found in females, is incomplete or missing. While some babies can live a normal life with Turner’s Syndrome, many develop other conditions like Hydrops and Cystic Hygroma and their lives end in spontaneous abortion or stillbirth. Research says one in 2000 to one in 5000 babies have TS. We just happened to be that one. I wish I could say we would be the last but we know that wouldn’t be the case. They did say the silver lining of finding out that the baby has TS is that this is one of the chromosome abnormalities that would least likely happen to us again. They told us that there was a 99.9% chance that this would never happen to us again and that we could not pass this down to our children.
I had to continue to go into the doctor on a weekly basis for fetal heart tones and checks to make sure I was not developing preeclampsia until the baby passed. When we are at the doctor that week the heart tones were still in the 140 range, which had been the case for the whole pregnancy. Unfortunately, by mid-week the heart tones had dropped significantly to the 70’s. I was still feeling a lot of movement, which was one of the hardest parts for me. It was a mental battle. I was trying to enjoy and embrace every movement I felt but knowing the end result made it that much harder. My belly continued to grow rapidly as I was 24 weeks. It was very hard to get dressed each morning, to see myself and not be sad of what the future held for us. I kept telling myself every day that God had some plan for us. We didn’t know what His plan was at that point, it felt unfair, but we were hoping someday we could see through His plan. The best comparison of how I felt at that moment was that I felt like I had become a hospice nurse, only my patient was inside of me. It was my responsibility take care of my baby (my patient) and give her as much comfort as possible until she passed, just how hospice nurses care for their patients. This may seem like a weird analogy but it helped me get through it.
When the moment came, so many thoughts and emotions went through my head. Guilt, failure, sadness, fear, relief and lots of love, to name a few. With all these emotions, and so many choices to be made, all I could do was cry.
The day came exactly two weeks after we received the devastating news and had made the decision to give our baby girl the best life possible for her remaining days inside my body. On October 7, 2015, our precious angel arrived. We named her Violet Erin Jo. Erin, after our wonderful doctor, and Jo, after my grandmother, who had just passed away from cancer.
The weekend prior to her arrival, I knew something was wrong. I was in so much pain that all I could do was sit and rest while trying to find comfort with a heating pad. I thought many times I was going into labor but then the pain would cease. Violet was still very active and I could feel her every movement. On that Monday morning I decided to go to work. I wanted some sort of normalcy back in my life and thought this would help. I had a good morning at work and came home on my lunch. I still didn’t feel right though so decided not to go back to work and instead stayed home to rest. That night when I went to bed, there was no movement, which was odd because she was super active in the evenings and in the mornings. There was still no movement the next morning and I knew. A million thoughts were going through my head. Do I tell Jeremy? Do I just wait and see if maybe I am wrong? My mind would trick me into believing that maybe I felt her move. There were so many thoughts and emotions. I had an appointment already scheduled for that afternoon so I knew there was no point in going in to the hospital immediately. Several minutes before we walked out the door for our appointment, I looked at Jeremy and asked “What are we going to do if there is no heartbeat?” I don’t know if he believed I was being serious but deep down I knew the time had come to ask myself this very question.
We got to the doctor’s office and I told my doctor that I hadn’t felt movement and what I believed to be true at this point. Once again, I cried. She got the Doppler out and we tried to find a beat but my heart beat was the only sound. We proceeded with an ultrasound to confirm and, yes indeed, our sweet baby girl had passed. My heart sank and I thought to myself “I can’t believe she is gone”. With so much relief that she was not suffering anymore and so much sadness that the moment had come, we once again had to start making choices. I want it to be known that we were truly blessed with the greatest doctor ever. If it hadn’t been for her these choices would have been so much harder. We decided to head home to pack our bags and drive to Madison with our doctor. Yes, our doctor is that amazing that she went to Madison with us and was there for us with the most unconditional support and love of any human being, let alone doctor, could provide. I honestly couldn’t have made it through everything without her. We are so lucky to have her in our lives and couldn’t have found a better person to name our sweet Violet Erin Jo after.
Twenty-four hours after arriving in Madison, our baby girl was born an angel. It was a very long, brutal labor and delivery. My body wasn’t ready to let go. I thought that the emotional pain would numb the physical pain but I was completely wrong. The emotional pain made the physical pain so much worse. With the most AMAZING husband and doctor by my side the entire labor and delivery and, with their physical and emotional support, I was somehow able to push through. I will never forget how minutes before her arrival, with everyone staring at me, I had to take a short mental break. I sat and cried. At that point the only pain I felt was in my heart. I never in my life thought it was possible to be this sad and to emotionally hurt this much. I wasn’t ready for it to be over and to let go, but part of me felt a sigh of relief that certain aspects of the situation were coming to an end. I had given my baby the best life inside of me possible but now it was time to lay her to rest. I took a deep breath and minutes later she was there. The medical staff put our angel aside and focused on me and my physical well-being. I just wanted to be left alone. Once things were under control with me, my thoughts remained with our angel. I wasn’t sure if I was ready to see her, I was scared. Erin (my doctor) went over and saw her first. I asked her every question I could think of about our little girl. She answered them honestly and she brought her over for me to hold. Jeremy and I just stared at her, she was OUR baby. In all the years of my life I will never forget the moment of looking at her tiny face, hands and feet. She was our angel.
For days after the delivery, the physical pain was a constant reminder of the emotional pain. I cried a lot. I felt as if my life would never be normal again and all I wanted was my normal life back. I wanted to be alone with Jeremy and try to pull myself together. Every hug hurt, not only emotionally but physically. I couldn’t get a grasp as to why this had happened to me, what I had done to deserve all of this. I could not see the light at the end of the tunnel.
Then one morning, I was scrolling through Facebook and I came across a picture of a sunrise. A whole whirlwind of emotion came over me and I sat and cried. I finally felt like my life wasn’t over. My life may have been shattered for the last few weeks, but it wasn’t over. Other people that have been through this made it through, and so would I. The sunrise made me feel like I was alive again and every day was going to be hard but the sun would rise again. I realized I had never given thanks to the fact that the sun rises each day. We have so much in our lives that each and every one of us takes for granted every day. We are all guilty of always wanting more instead of sitting back and realizing how much we already have. We always want a bigger house, more money, a better job, a new car, more kids, to be married and are always comparing ourselves to everyone else. I don’t feel like I am that person who always needs something better but I know we all get that way from time to time. For the first time in my life, I felt like I won the lottery. I had the perfect house, the perfect car, the perfect job, the perfect amount of money and the perfect family. I was more thankful than ever for the things I did have. It makes me sad to think my life had to be shattered to realize this. Don’t get me wrong, I have always been a thankful person but my thankfulness was just taken to a whole new level. Every time I see a sunrise I am sure it will continue to make me cry but also make me feel thankful. God is good!
We have many tough days ahead of us and there will be no end to the pain from losing a child. The memories from what I call “the two weeks of mental torture” and “the brutal delivery” will continue to haunt me. I know that with time, some of these horrific emotions and memories will fade but we are going to be forever changed. I know we would think of our sweet Violet every day. We know that she is in a great place and watching over her mom, dad and three brothers. She is forever our angel.
The day of the funeral, I woke up and thought to myself “I can’t believe I am going to my baby’s funeral”. It is seriously every mother’s worst nightmare and I couldn’t believe it was happening to me. It was a feeling that I can’t even explain. It was so difficult to wrap my head around the fact that this was happening to me. I often say to myself, why me? Why my child? I am not sure that this will ever make sense to me. I just hope someday I can find some sort of comfort and peace.
During what I call “the weeks of mental torture” my plan was to get all the funeral arrangements made so when the day came it was all planned out. It was so emotionally and mentally draining not only planning a birth but also a funeral. How does one do that? I thought to myself “this is not the way life is supposed to be”. I finally set up a time to meet with our pastor and the funeral home but unfortunately the day we were supposed to meet was the day we lost her. I was so fortunate to personally know the funeral director, Tiffany, and I don’t know what I would have done without her. She made this process much easier and more comfortable for us. She came to me with so many ideas that never even crossed my mind. She is truly an amazing person and amazing at what she does. I will be honest with you; I have always had a fear of cemeteries. Yes, I still visited loved ones who have already passed but it had always been very difficult for me. Jeremy and I decided we were going to buy plots so that our precious Violet could be at rest someday between her mother and father. I couldn’t bring myself to help pick out these plots. Thankfully my father helped out and went with Jeremy to pick out the plots. I hated the fact that I was 30 years old and had a cemetery plot.
The day of the funeral, Jeremy, the boys and I went to the funeral home to add items to the vault and seal it. Ian, our middle son of course couldn’t let her go without being a Packer fan, so he took a Packer flag from his room and put it in with her. Braun, our youngest son, made her a sweet letter with her brothers’ names on it and attached a Lego lightsaber to it. He said the lightsaber was her magic wand that would help her continue to grow. With the help of Ian and Bailey, our oldest son, Jeremy sealed the vault. The feeling of knowing we would never see her again was heart wrenching. The pain in my heart was the true pain of a broken heart. I felt like someone was literally ripping my heart out of my chest. I know deep down that she is in a better place, free of pain, she will never suffer again and will get to live the most amazing life in heaven, but the pain in my heart was just not fair. To anyone who has ever felt this pain, I am sure you know that exact pain and I am sorry that you ever had to experience it. It is a stabbing, heavy, throbbing pain in the base of your heart that never goes away. I try to embrace that time spent with her after the birth. Those hours are ones I will cherish forever and will never forget. Pastor Mark performed a beautiful graveside service for our precious Violet with our family surrounding us. We released balloons for a send-off of our sweet little girl to heaven.
Every day is an emotional roller coaster. As I said before, the pain in the base of my heart will never go away. It is a pain that only one who has lost a child can explain; it is a pain that you hope no one ever has to feel. There were days when all I could do was cry and days when I felt like my emotions are completely shut off. There were also days when I was just angry. For six months I thought I was having a baby. I bought many things for the baby, counted down the weeks to go, talked about what I was going to do on maternity leave, had baby room ideas in store and to have it all ripped away from me, it is the most devastating thing ever. Every week I would think about how many weeks I would be along if she had survived or how big my belly would be. As my due date got closer and closer I felt like the pain got more unbearable. I often asked myself if things would get some better after my due date approached. I felt like after each milestone I get over a hurdle of pain. Only time will tell.
The thing I find to be the toughest daily obstacle to overcome was looking in the mirror. I often forgot until I look in the mirror that I no longer had a baby bump. Many times I had caught myself looking in the mirror to only realize my belly was gone. Every time that happened to me I relived the initial feeling I had after I lost her. Many times getting ready in the morning I found myself sitting in my walk-in closet crying. I just prayed and hoped that this would ease with time.
Talking about it helped. Many people still found it difficult to talk about with me and are struggling to find the “correct” things to say to me. There is no “correct” thing to say, simply just say, “I’m sorry.” That’s it. I want to share my story and talk about it so if anyone had questions, I wanted them to ask me. If I cried, or they cried, while talking about it, that was okay. This was part of the healing process that I needed. I felt like this was a long journey and the pain would carry on. I had to give myself a daily reminder that tomorrow the sun would rise again and I would make it through this journey. Each day may not have been a good one, but I was blessed that God gave me another day.
Through the next few years there were still ups and downs. It has been three years since we lost our precious angel. First thing I can say is it has not been easy! The emotional roller coaster is one that only those who have experienced significant loss or trauma can define. You become a part of this group that no one intends, or ever wishes, to be a part of but somehow you end up in it. I have met some pretty amazing women who have fought the same battle as me and was recently asked to be a part of a photo session called #babylossis (Please look this up on Facebook under Krysthol Davis Photography). At first I wasn’t sure I wanted to put myself and pictures out there but ultimately decided that I wasn’t going to let these brave women fight this battle alone, nor was I going to contribute to the stigma of losing a baby where some feel it is shameful and you shouldn’t talk about it.
What is #babylossis? It may be defined differently by each individual’s experience, and I could tell you so many heart wrenching stories of the situations I have encountered over the years, but over the last couple of years I’ve thought long and hard about how this experience has impacted me. No list could ever capture the full reality of losing a baby but I’ve found the nerve to finally put some of those feelings on paper.
Baby loss is: having a tremendous fear of babies; the fear of walking in to a birthing suite to visit your friend; countless nightmares; attending birthday parties while fighting back the tears; seeing a child that is the same age your child should be and putting on a smiling face; having a fear that something will happen to one of your other children; laying on the bathroom floor rolled in a blanket unable to move; making yourself get out of bed when you don’t think it’s possible; having an anxiety attack when you always wondered if they were even real; answering the most heart wrenching question “ how many kids do you have?”; wondering if it will make or break your marriage; celebrating birthdays and holidays with an empty seat at the table; hoping and praying your husband and other children can forgive you for the anger/crying outbursts; having some faith that your children will be able to recover from the trauma as well; being on multiple medications to get you through the day/night; losing friends that don’t understand; realizing you are not the same person nor will you ever be and trying to get others to understand; having to explain that I am still a mother of a daughter even though you can’t see her; not bursting into tears when someone tells you that you really need a girl; learning to deal with the fact that others have moved on with their lives but your still dying inside; getting sick to your stomach when people announce they are having an ultrasound; selling and letting go of all the baby items you bought; becoming more thankful for all the things big and small in your life; unfollowing people from social media because their “perfect life” is just too hard for you to handle; listening to people complain on social media that they are “ still pregnant” or “pregnancy sucks” or “my baby didn’t sleep all night”; the fear of ever having another baby; decorating your daughter’s grave only to have your heart broken each time you go there because not only are you aching for your baby but heartless, horrible people have stolen everything off her grave; and lastly the PTSD.
Okay, I’m sure you are over hearing the sad stuff but this is the raw truth. I want to tell you all something that I’ve come to realize. When trauma or loss happens, you can do one of two things. You can continue to spiral down this long path of despair or you can pick yourself up and run with it. I have chosen to run with it. That certainly does not mean it was an easy conclusion for me to come to or that I don’t have bad days or triggers that still hit me. This simply means I have accepted that God has a plan and I’m going to see where his plan takes me.
I am about to get “religious” on you but you need to hear this. I was angry at God just like anyone is when something bad or traumatic happens. But I decided to pray every day to ask him why he had led me down this path that felt like brutal torture. I knew deep down he had a plan for me and I just needed to ask for his guidance to get me through the pain.
One year after we lost our precious Violet, I randomly received a Facebook message about a nursing job. This wasn’t any regular nursing job but it was doing work that after the loss of Violet, I never imagined I’d be able to do. It was working with pregnant moms! I thought, seriously, those people are the scariest people on the planet! But I applied for the job anyway. After interviewing and hearing about my life experiences, I was offered the position. It didn’t take long for me to fall in LOVE with my job. This led me to doing limited OB Ultrasounds, which up to that point I couldn’t even mention the word ultrasound without getting sick to my stomach. This led me to the, what had become to me, unimaginable goal of becoming an RN. See, I had my LPN for many years and didn’t think nursing was my thing so quit pursuing my RN and took a different career path. Being a nurse was no longer my plan, but as it turned out, it was God’s plan. I had prayed so hard for him to guide me and was patient and believed he would lead me in the right direction. If I hadn’t chosen to take my loss and run with it, to ask for God’s help, I would not be where I am today. I would not have made it through school; I would not be working as an RN in a position I love; and I never would’ve gotten through the “tough” stuff.
Trauma can either make you or break you. I am shouting out loud and clear to all those mothers “stuck in that rut”. YOU can do this, I promise! It won’t be easy. In fact it will be one of the hardest things you will ever do but if you follow God’s path, you will find your light at the end of the tunnel.
As I stated earlier; SUNRISES. That is what got me through those dark days that I didn’t think were possible to get out of. Know that you are here for a reason and everyday God will give you another day and another sunrise. If that means all you can do is get out of bed and shower. DO IT! It takes small steps. I am still not all the way there. I still shed tears (even as I am writing this to you). I still have bad days but I also have good days. Find your comfort and faith. Most importantly, find your person. The person you can count on when you have those bad days. The person who will bring you something unexpected or show up at your house at just the right time. Find the person you can cry to for even 10 minutes and feel like you just conquered your fears. You will always need that person. Believe me you will find that person and don’t ever let them go. My person knows who they are and they have been my solid rock who has got me through every step of this way. I could never be more thankful that God gave me “my person”. This person may be someone you already know or somebody you find in that new community, somebody who can share in their loss.
I always got in infamous question; “Are you going to have more children?” I realized I couldn’t be pregnant again emotionally, it would just not be best for me or my family. This was a tough decision to make and it is not the right decision for everyone who has gone through this unbearable pain. You must make that decision for yourself.
One thing I learned and I am proud of is that I will NEVER not talk about Violet. When people ask how many kids I have, I say “four”. Be proud and don’t ever let someone make you feel that, although they may not physically be able to see your child, he or she, is still your baby. If that makes people uncomfortable, that is unfortunate, but I am not sorry. No mother should ever not be allowed to talk about their child, deceased or alive. Violet will forever be our angel and there is not a day that goes by that I don’t think of her. She has changed me, molded me, made me stronger, made me more thankful, made me love deeper than I ever thought was possible.
Please, if you find yourself in this situation please feel free to contact me. Having someone who can relate to you, validate your feeling and make you feel sane at your worst moments is something every mother needs after a loss. Take care of yourself and know you will always be an angel mom and you should be proud of that every day! Remember the sun will rise again tomorrow and God gave you another day.
The Butterfly Effect Project 