My Mama Saga: “There will always be someone missing.”

Written by Leandra from Pennsylvania.

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My first pregnancy was picture perfect. Pregnant on the first try, no worries, no issues; we were blissfully unaware. Fast forward after 5 long years of infertility issues and one miscarriage, and we were finally far enough along to think we were safe and having another healthy baby. But this one was very different from my first. I had a lot of pain and a lot of fluid, but everyone including my doctor kept saying, “Different baby, different pregnancy.” So that’s what I kept telling myself, but my heart knew differently.

At 27 weeks I looked like I was 40 weeks and I felt like it too. After many tests my baby was finally diagnosed with Non-immune Hydrops. I had no idea what that was but I was prepared to deal with whatever came our way. What I wasn’t prepared for was being told my baby had only a 20% chance of survival. Like anyone else I spent the next few days googling and searching for any information I could on the condition but found that there is very little research available and doctors don’t really know what causes it. In just two short weeks things went from bad to worse. My baby’s body was filling up with so much fluid and so was mine. I stopped feeling him move and I knew something was gravely wrong. I was already in the hospital being monitored so they rushed me in to have an emergency c-section.

Matthew James was born at 29 weeks into a room filled with frantic doctors and nurses.

There were no cries or congratulations. They slightly sedated me but I could still hear them yelling things like, “Code blue!” and “We have a heart beat.” He almost didn’t survive the birth but somehow pulled through. His doctor called him heroic – a moment I will forever be proud of. I lost so much blood and collapsed in the shower, and I needed two transfusions so I wasn’t able to see my baby until late that night. Very quickly after first seeing him my husband and I were placed on another floor so we didn’t have to be around all the other moms and healthy babies. I didn’t feel connected to him, it didn’t feel real, he was hooked up to so many tubes. I couldn’t hold him, couldn’t nurse him. All I could do was hold his little hand. I felt so guilty and ashamed for not feeling the same connection I felt after my first son was born.

From the moment we received the news about him having Hydrops I remained surprisingly calm, even through the birth and the days to follow. Looking back now I’m not sure if it was calm or disillusionment. Everyone was praying for the best and my husband had so much hope, but I didn’t. It wasn’t negative thinking or lost hope, it was just something I felt; in my heart I knew what was to come. Family and friends visited frequently to provide support, not knowing what to say or do. Their presence alone was enough.

Three days later we were just about to lie down after one of my husband’s numerous trips up to the NICU… I was still too sick to be there all day and was told to stay in bed, a regret I will carry for the rest of my life. We heard the nurse’s phone ring and I knew. She came in and told us we needed to go upstairs, now.

We entered the NICU and found nurses and doctors all around him, one was on top of his bed administering CPR. I knew he was already gone so I just held his hand and told him it was ok to go, that we were so proud of him and that mommy loved him so much. They stopped and told us we could hold him in just a few moments. I was wheeled out of the room and tried to wrap my brain around what had just happened, still feeling somewhat calm. They brought him to me and placed him in my arms…

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And there it was, that heavenly bond, that connection I longed for and was afraid wouldn’t come. In that moment I finally felt it, even though he was gone. It was in that moment when I held him that I broke down. There are no words for what my mind and heart were feeling. It was the feeling I felt when I held my first son. Love, true love. Except this time it was accompanied by utter heartbreak. It was then that my tears were uncontrollable, the sobbing uncontrollable, my heart literally broke. I couldn’t stop kissing him, caressing his head, holding his hands. I wanted to hold him forever. There’s nothing that can prepare you for the moment they take your baby away, knowing it’ll be the last time you hold him. There’s nothing that can prepare you for the emptiness you feel not only in yourself but for your husband. There’s nothing that can prepare you for leaving the hospital with just a box of his clothes and an empty car seat. We weren’t prepared when we arrived home and our 5 year old asked if his baby brother was finally home.

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I spent months searching for information as to why it happened. I kept wondering if I had done something wrong. Did I take a medication that hurt him? Did I somehow cause this? Extensive tests were done and they all came back normal, we had no answers. I didn’t want to go out in public in fear I would see someone I knew and have them ask me about it, knowing I would fall apart wherever I went. I was tired of hearing everything happens for a reason. I was tired of people telling me we could try again, as if that would somehow make it all better or make me forget. I felt every emotion possible. It would have been very easy to slip into a very dark place, but my son Jack and my husband helped pull me through. We somehow lived through it. We lived through burying our baby. We lived to worry and fear that we’d never again have another child. We agonized for 9 months through another pregnancy knowing it could happen again. No matter what the odds were I didn’t believe them. If it can happen once it could happen again. If the chances were so slim the first time, why shouldn’t it happen again? I no longer believe in odds or percentages, they mean nothing. I stopped asking “why me?” and started thinking, “why not me?”

We now have a 3 year old little girl, Lila, and my son Jack is 9, but we are not the same carefree people we once were. Everything else is now trivial and life is more precious. Losing a child changed me forever. I want to wrap my arms around my children and never let go. I don’t want to send them to school, I don’t want to send them to their friends’ houses to play. I do it, but I don’t want to. Time is precious and I want them with me at all times. I know these thoughts are unrealistic and irrational, but I can’t help it. I resent every event that keeps me from them. I panic with every illness. I try my best to not let this interfere with their lives and I sometimes feel like the worst mom in the world, but I fear these feelings will never go away.

I don’t think my friends will ever truly understand. I’ve lost some close relationships because of this experience – friends who only wanted a friend like them, someone without emotional baggage or issues. But I try every day to be better and I am so incredibly grateful for everything I have. I feel very lucky.

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We will always wonder what could have been or why it happened. There will always be someone missing. The pain is permanent but my children are worth every breath, they make me happier than I ever dreamt possible.

I do believe I was given one last moment with Matthew. After my daughter was born she wrapped her little hand around my finger and I felt him, and I cried. I like to think there’s a little piece of him in her. We believe he sends little feathers to us – his way of saying hello. The kids love finding them in the house, especially when they pop up in strange places. His hospital blanket and hat have been next to my bed since the day we came home. I’ll sometimes breathe in his little hat to feel closer to him. I often have dreams of loved ones that have passed but have never dreamt of him. I don’t know why or if that means anything at all, but I keep hoping he’ll drop in one night to say hello. For now I’ll continue to keep his memory alive for my children so that they’ll always know how special their heroic brother was.

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