We conceived our third baby after a long year of Covid. 2020 was hard on everyone and the idea of a lasting little gift in the form of our last child coming out of such a terribly stressful and sad year seemed poetic.

I was immediately stressed as I always am when I become pregnant. After three previous and early losses I had learned to be guarded. I quell any excitement and immediately detach from the possibly of a healthy baby until we hear a heartbeat. In my past experiences with loss there had never been signs of life, only almost immediate acknowledgement that things were not progressing.

At just shy of 6 weeks I had my first sonogram. I was alone because of Covid regulations but I wasn’t tremendously scared. I was even calm. I had had numerous blood draws and all my numbers were increasing which has always been such an encouraging sign. I wasn’t sure there would be a heartbeat this early but sure enough, we saw and heard it without issue.

The next 12 weeks progressed but there was stress. Placenta problems, autoimmune issues, medications. Intervention after intervention. Through it all our baby kept growing. I was sick. Sicker than I had been with my two boys. Everyone took this as a sign that we were “finally getting our girl.” I grimaced whenever anyone said this to me. I cried about it. I knew how precious this life was, gender aside. It felt selfish and wrong to celebrate harder at the thought of a baby girl.

At 14 weeks, after our uneventful nuchal scan and flawless genetic bloodwork I announced our pregnancy to our circle of people. It seems ridiculous now. How didn’t I know?

I went for a routine visit to my OB at 15 weeks without a thought that something was amiss. The Doppler came out and I swear my heart didn’t drop. This baby was fine. Except nothing was fine. My doctor couldn’t find a heartbeat. He kept moving the machine around on my belly and saying “nope, that’s you.” After 30 seconds of this the tears came. Unknowingly really because now I was detaching from myself. I had been here before. I turned inward as I was shuffled into the sonogram room. It felt like I was walking underwater. Everything was slow and blurry.

And then there he was, my third son. My perfect little baby. It couldn’t be possible that he was gone. His arms and legs and sweet little profile were all there. His heartbeat was not.

What followed was hysteria. The kind of hysteria I still have a hard time taking myself back to in my mind. Peoplecoming in and out to try and comfort me, asking me to call my husband as I was in no state to drive myself home. I was hyperventilating. I was sobbing. The phone to my ear, I heard myself whisper “the baby died.”

I knew what came next. The surgery, the bleeding, the hormone shift, the tears, the sorrow. I was familiar with it all. Except now I am living through it without a single clue how this story ends. How can I be selfish enough to want THREE children? Shouldn’t I just thank God for the two I already have? Will another pregnancy take this pain away or make it worse?

I have no idea what comes next and it’s terrifying.

When your baby dies, you turn into a fish in a fish bowl. There is immediately glass separating you from the rest of the world. Those on the outside look in at you. They stare and wonder what you’ll do next. They talk to you, but you can’t really hear what they say. The world on the outside is familiar to you but it’s all in slow motion. The sun shines, the people float in and out but the pressure of the water is everywhere. It weighs on you.

Being a loss mom breaks you open. Your guts spill out and you have no way of going back to life before.

“One day you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide” - Brene Brown 

My husband and I met later in life, once we got engaged, we knew we wanted to have a family right away…but we never anticipated the struggles we were about to endure. 

We got engaged in February 2020, started planning a wedding for May of 2020 and little did we know the world had other plans in store. Once we realized our wedding was not going to happen, we decided to focus on starting our family instead. We wanted 2 kids, that’s always how I envisioned my life once I found my person. I got pregnant relatively quickly - and we immediately started figuring out how and when to tell our families. We decided Christmas was going to be the day that we announced. I had my first Drs apt in the middle of December and I just couldn’t wait for it! We were over the moon! I walked into that appointment with so much excitement - I felt invincible, never imagined the worst would happen…but it did. There was no heartbeat. No baby in my uterus. We had what I learned later was a blighted ovum. No baby ever grew. Our hearts shattered. No one knew we were pregnant, so not only did we have to tell everyone we were pregnant but that we lost the baby in the same breath. It was awful…a few days before Christmas, and what was supposed to be the happiest time of our life - into the hospital I go (by myself - thanks Covid) for a D&C. I couldn’t stop crying and never felt so alone in my life. The nurses did the best they could to console me but being alone and just waiting for the procedure was so awful. My husband was outside waiting for me to take me home and we just cried it out. A piece of my innocence had been stolen. 

As the weeks and months went by, we started to heal ourselves and decided we were ready to try again. My OB also suggested meeting with a fertility Dr since we were older and already had a loss. We met with one, started the process of doing the preliminary bloodwork and appointments etc. Everything was coming back normal. We weren’t carriers for anything and the only thing going against us was our ages (I was about to be 39 and my husband was 42). In the middle of all of these tests I got pregnant again in April. My due date was a few days before the anniversary of my last loss. I just knew this was a sign - full circle. The fertility Dr had monitored me in the early weeks of the pregnancy to keep an eye on things, and at our last apt we got to hear the heartbeat - it was the best sound we had ever heard! Tears of joy! My Dr then told me I had graduated from his care and had to go to my OB now. I had a pit in my stomach, I didn’t want to go back to her office - where we got the bad news last time. I had to tell myself we were okay. We heard the heartbeat. It’s a huge milestone. This was a different pregnancy. We hesitantly head into my OB’s office slightly guarded but definitely excited. I had more symptoms, I felt more pregnant than I had before, we heard the heartbeat the week before. We didn’t think lightning would strike twice. I just knew this was going to be our time. The ultrasound technician is starting the exam, and I instantly knew something wasn’t right. Something didn’t look right with the baby. And once again there was no heartbeat. I lost it. I couldn’t handle this pain again. I didn’t understand why this was happening to us. What had gone wrong in 1 week!? We opted for another D&C so that we could test the baby to see why this was happening, maybe gain some insight as to what was wrong. Thankfully this time my husband was allowed to be in the hospital with me to help console me. I was broken. Seeing my husband crying broke me even more. Why couldn’t I give us the family we so desperately wanted? Why was this so hard for us? We later learned that this baby had trisomy 13 (an extra 13th chromosome) which was not compatible with life and would never have survived. As much as this hurt me to hear, there was some peace in knowing that there was a reason for our loss. We decided to take some time off and heal physically and mentally and, in the fall, go full force ahead with IVF. We wanted to be able to test the embryos and hopefully eliminate any more heartbreak. This made the most sense to us. We knew that this was going to work for us. I can get pregnant, I just had poor egg quality and with the testing we could pick the best and healthiest embryos to transfer. I felt confident with my fertility Dr and his team, and we were nervous but hopeful. Our first retrieval we got 10 eggs, 7 fertilized, 2 embryos and out of those 2 that made it, only 1 of them was PGT-A (Preimplantation Genetic Testing) Normal. We were very discouraged with this result. We had another consult, came up with a more aggressive treatment plan for my next retrieval. This time we got 20 eggs, 12 fertilized, 5 embryos and out of those 5 we got 2 PGT-A normal. We had 3 embryos to work with. After weighing the pros and cons of possibly putting myself through another retrieval and our wanting to have 2 kids and knowing the odds of IVF, and the of course the financial aspect of it all (we didn’t have insurance for IVF) we decided to roll the dice and work with the 3 embryos we got. We felt that because I was able to get pregnant “easily” and knowing these were healthy embryos we felt confident moving forward. We had our first transfer cycle scheduled for March 2022. Everything was going well…transfer went smoothly. 2 weeks later I got another positive test, and my beta levels were good! We were cautiously optimistic. My Dr was closely monitoring my levels and at my next blood draw my HCG dropped…and so did our hearts once again. They thought it was a chemical pregnancy but then my levels started rising again and after a quick ultrasound, I was diagnosed with an ectopic pregnancy. I had to go to the hospital and get a shot to terminate the pregnancy. Our hearts were so heavy. So many questions, with the main one being…why us? Why was this so hard for us? We wanted it SO badly. Having a family shouldn’t be this hard. Because I had received the shot, it took awhile for it to get out of my system and once again it felt like months were flying past us and we were standing still watching time go by. We couldn’t try, we couldn’t do anything. We felt helpless. We tried to enjoy the summer as best as we could, but we were struggling internally. We had some more consults and had come up with a new game plan for the fall. We felt as positive as we could given our history. My Dr was confident, and we held onto that. Fall of 2022 we had our second transfer and the Dr said it couldn’t have gone better. We waited the 2 weeks and got another positive beta! It was a much higher number and we felt that this was FINALLY our turn. My numbers continued to rise appropriately - and so did our hope. We heard the heartbeat and saw a healthy little baby. We graduated from the fertility clinic and off to my OB we go. A week later we had our first appointment with her and neither of us wanted to admit that we were nervous walking into her office, but we knew things were progressing and we held onto that hope. We held our breath and waited…and waited, and I knew something was wrong. I could see it on her face. Our baby had stopped growing once again. I was in shock. I just couldn’t believe that this had happened to us again. How could I have had 4 miscarriages? How do we move on from this? All I knew was that I needed answers. I needed to know why this happened. I went in for another D&C and waited for the results. When they came back there were no known issues of why this happened. It was a healthy baby . This loss broke me more than anything else that had happened previously. Why couldn’t I carry a healthy baby? I was barely functioning. My marriage was struggling.  I was a shell of myself. I lost my hope. I wasn’t sure we were meant to be parents. I had never felt so lost. I knew I needed help. My mental health was the lowest it had ever been. I found a therapist that specialized in infertility and began sessions with her in early 2023. My husband and I took a trip to Antigua to rebuild us and get away from it all and just reconnect with each other. We slowly started to heal our wounds. We had one embryo left. Do we do another retrieval? Do we transfer it? I knew I couldn’t give up with having an embryo left. But I also didn’t know how much more my heart could take. I started to come to the possibility that this may never happen for us. And it hurt to think that, but I had to be prepared for the worst. After many discussions we (my husband and I) decided I needed a break. I wanted to enjoy life. Enjoy the summer - I needed to feel carefree for a few months and not worry about IVF or trying or anything baby related. I had just turned 41, and that scared me because time was not on our side, but I just needed a break still. A few days later while making sure that my Dr was on the same page with us, as I was talking to him and discussing the plan, I had casually mentioned that I was a few days late. And the look on his face was priceless. I didn’t really think much of it because with all the trauma my body had gone through, it didn’t faze me. My Dr made me come in the next day for bloodwork and sure enough I was pregnant! My beta was the highest I had ever seen it in the 3 years of trying. I was in shock. My husband was in shock. And then the fear settled in…what does this mean for us? We couldn’t even be excited. We were scared and numb. Once again, my fertility Dr kept a close eye on me and monitoring my levels. We had our first ultrasound and heard that precious sound of our baby’s heartbeat. It was amazing but also terrifying because we had been down this road a few times. I begged my fertility Dr to keep me another week because my anxiety was skyrocketing knowing my next apt was going to be at my OB and I couldn’t handle getting bad news in that office again. He agreed to keep me under his care for another week. We had never heard the heartbeat twice. So going into this next appointment even though it wasn’t at my OB’s we were scared. I held my breath and waited…and then got to hear that precious sound. This was a huge milestone for us! We couldn’t even believe it. Complete shock. Still cautiously optimistic but this was new to us. I graduated from him that day and had an appointment the following week with my OB. I tried to distract myself as best as I can during that week. Finally it was appointment day. We drove to her office in silence just holding hands. Fearing the worst. Into the room we go. I couldn’t even look at the ultrasound technician. I could barely look at the screen - was just waiting for that awkward silence…and all of the sudden the room filled with that swish swish sound of our baby’s heartbeat. Tears streamed down my face. We had broken the cycle of bad news in her office. The baby was growing, and we even saw it do a little tumble floating around. There were no words to describe how we felt. We had heard the heartbeat 3 times. We had made it to 10 weeks (the farthest we had ever gotten). Complete and utter shock. My OB came into the room and just hugged me, and I cried into her arms, she had been there through every struggle and was over the moon for us. She had us do the genetic testing and we then started holding our breaths again. This was a natural pregnancy. I was 41. So much has gone wrong for us. We waited and waited for the results…finally about 5 days later my Dr calls me and the baby was perfectly healthy!!! Once again, we were in shock. Could this be it for us? Was it finally our turn? We waited a few more weeks and things kept progressing and were out of the first trimester. Pregnancy after loss(es) is a wild ride, you are in survival mode. I so desperately wanted to be excited, but I couldn’t, my heart wouldn’t let me. I was still not attached to this pregnancy. I couldn’t be happy yet. I knew we still had milestones to get to first. We slowly started telling our families. We didn’t want to tell too many people because we were still nervous, and it still didn’t feel real to us. It was finally our time for the anatomy scan. It took 3 appointments, but the baby was perfectly healthy - everything was perfect. That’s when the shock wore off and we realized we were actually having a baby! 

I still have to pinch myself that this is real. After all we went through and at 41 years old, I got pregnant naturally. You always hear these crazy stories, but never in a million years did I think I would be one of them too! It’s been quite the journey, and I sit here in the nursery feeling my little baby tumbling away and my heart is so full. I am 35 weeks pregnant and am just in awe of this little miracle I have growing in me.

Lydia Josephine Schwartz

March 1, 2021- December 25, 2022

Lydia was born on March 1, 2021 in New Jersey. She was our only child and our entire world. She loved going to the park, bubbles, snuggling with our three cats, eating snacks, and going to The Little Gym. She enjoyed watching Toy Story, Finding Nemo, Miss Rachel, and Elmo. Lydia was
silly. She was always smiling and laughing. She loved watching videos of herself and would say (and sign) “again!” every time it was over. She always said “hi” and “bye bye” to everything she saw. At school, she was so loved by her teachers. They described her as kind and gentle. She loved to help out whenever possible and was a great listener. Lydia was a healthy little girl and reached all of her developmental milestones quickly.

For many, Christmas Day is often filled with magical and joyful memories. For me, it will remain the worst day of my life. Christmas morning, Lydia had a very slight fever. She didn’t have an appetite (which was unlike her) and seemed cranky and lethargic. We figured she was fighting off a little bug she must have picked up at daycare and decided that it was best to let her rest for a little bit before we opened up presents. A couple of hours later, I went into her room to wake her up from her nap and realized that she was not breathing. First responders arrived quickly and she was rushed to the hospital but she never regained any signs of life. She was just a few days shy of 22 months when she died.

The results of the autopsy revealed that Lydia had a very rare congenital defect in the artery branch of her small intestines, which led to her dying from a volvulus. So many medical professionals have told me that this defect is so incredibly rare and mimics such minor everyday symptoms that it is almost impossible to detect. Many have told me that, even if I had brought her into the hospital that day, the doctors would likely not have caught it because her symptoms were not serious enough to warrant hospitalization or further testing.

Since Lydia’s death, I have found comfort in connecting with other bereaved parents. I have also channeled my energy into creating a nonprofit organization called Love From Lydia. The purpose of it is to provide support to families following the death of a child. When Lydia died, I mindlessly started crocheting little white hearts. It was one of the only things that kept me grounded so that I would not anxiously pace or stay curled up in a ball crying. Lydia was buried holding one of those hearts in her little hand. During a time when my life felt like it was spinning out of control, it brought me a tiny bit of comfort knowing that I was holding a matching heart. Since then, I have been giving out those hearts to people as well as leaving them attached to a little tag for people to find and either take for themselves or give to someone else who may need a little extra love. Performing this random act of kindness is my way of spreading her around in the world with hopes that she can continue to brighten someone’s day the way she did mine every day when she was living. As of the end of 2023, her hearts have been placed in 21 states in the US and 11 countries outside of the US. It is my hope that, wherever Lydia is, she can somehow feel the love and strength of everyone who holds a matching heart.

As part of Love From Lydia, I partner with hospitals and organizations to provide matching crocheted hearts (one for the parent(s) and one for the child), a letter from a fellow grieving parent, and a list of resources for emotional and financial support, which is given to parents/guardians following the death of their child. When Lydia died, we were sent home with nothing from the hospital– not even a pamphlet on support services, just the Christmas pajamas that she was wearing when she died, a miniature version of the very outfit I was wearing. Luckily, as a social worker, I knew where to find resources but I know that not everyone does. I remember being in the hospital and feeling so alone, like there was no way that anyone else could have gone through something so painful. Obviously, in my new connections to a club I never wanted to join, I know now that that is absolutely false. My hope in forming Love From Lydia is to help hospitals create stronger support for families who have gone through a loss. I also raise money to get mental health professionals and first responders trained in specialized grief work and more trauma informed care. Focusing on Love From Lydia has been incredibly helpful for me and helps me feel like I am continuing Lydia’s legacy.

To learn more about Love From Lydia or to connect, please visit www.lovefromlydia.com