Dialog Box

The Pink Elephants Support Network

Baby B - severe heart defect

Baby B - severe heart defect

So many moms who would rip their own hearts out so that their children would live. Mommy’s like me who had to be so strong and take the pain so that babies like you wouldn't have to.

Dear Baby B, It’s been two months since you’ve been gone. Mommy feels a little more prepared to talk to you and a little less angry and saddened at the world. When I found out I was pregnant with you, I was so ready to have another little baby in my arms. Your sister is the happiest baby and would have LOVED a baby to hold, feed, and play with. When I found out you were a boy, I was scared, but so happy- all I ever wanted was a baby version of your Daddy. Daddy is fearless and maybe you would be too. To describe what you meant to me is something I can never really express in words. I hope you never doubt how much you were loved and wanted and now, dearly missed. 

At 18 weeks, my world came crashing down. I look back and don't recognize that person in that room. I will tell you though, that night before, I was nervous something would be wrong, I could feel something was off, but couldn't describe it. I went in for my anatomy scan and didn't even realize how long the sonographer was taking- we were chatting, sharing secrets and gossip. When she left the room, she said she wanted to bring up a concern to the doctor about your heart, but that the picture wasn't great. The doctor didn't seem too concerned- go to a specialist, but we will get you in right away to be sure. My fear was now a reality. Fast forward a week, we traveled to the best hospital in Jacksonville. The scan took an entire two hours. It was two hours of silence while they scanned my belly- the silence was deafening. While your sister sat and played, I kept peeking at your daddy with a worried look, he smiled at me, trying to keep his fear from creeping in. 

The doctor finally came in with two sheets of paper with a diagram on it of a “normal” heart and your heart. All the while he described the veins, the blood patterns, etc., he painted a picture of your life- four open heart surgeries by the age of 4. Open heart if not right when you come out, if not within a short time after. Stents would be put in, possibly a mechanical heart, very restricted life, medicine and monitoring- you may not make it through any of the surgeries and better yet, if you did, possible neurological conditions from the lack of oxygen you weren't getting. Your left side of the heart was smaller- very small compared to the other side. A grim look was on his face the entire time. I fell to the floor, in a puddle of my own tears. My son….my life- was over. As I drove home from the hospital, I said nothing. I just held my stomach and prayed. 

As the next few days went by, I was paralyzed. I was just passing the time- i didn't even know how i got up in the morning. As I called on friends and family, we all cried together. Daddy and I wanted a full life for you. We had to make a decision. Time was not on our side either. There are laws and timelines- If we waited and it got worse, you would feel pain- I didn't want that for you. Our chances of it getting worse were higher than it getting better. It was moderately severe and not mild. As I went back and forth on what to do, I envisioned what your life would be. We went to the beach as a family one day that week, Daddy said we needed some time away from our house, time to do something to take our minds off of things. As I walked down to the beach, I noticed a nearby family playing- a small girl and a small boy. Their laughter filled the beach as they splashed and played, entertaining us all. I looked at your sister, she smiled back. This is what I wanted for you and for her. I knew then what I needed to do. I wanted a full life for you- but that life would be full of fear, pain and anguish. How could I do this to you- knowing everything the world would bring to you. But the selfish thought of wanting you was screaming out. I prayed on it and Daddy and I decided to take that pain from you. We would suffer for you. 

On April 27, you were taken from me. The night before, I held you in my arms as you kicked so hard in my belly. I was your home, you were loved and you were safe with me; safe from everything that the world would bring. The day of, we said goodbye to you with tears down my face, in a puddle of mush. As the nurses prepared me for surgery, the doctors told me you would not feel a thing. You came into this world with love and would exit with that same love. When I woke up from surgery, I felt nothing. I was stripped of every single ounce of myself. I missed your kicks, your hiccups, your everything. The life I imagined would never be. Instead of leaving with a baby, I left with a heating pad that was coincidentally in the shape of a heart with all of the heart muscles and parts given to me by one of your nurses. That nurse held my hand, wiped my tears and hugged me- she knew how much you were loved and wanted. 

As I left the hospital, I was made to go to the funeral home and collect your remains the very next day. I was also given your small footprints that the nurse graciously took for me so I could have a piece of you forever. Those feet will always be with me- I plan on tattooing them on me. As I put away my maternity clothes and the congratulations sign on my living room mantel, I was now faced with the harsh reality that life will continue to move. But please son, know that I think of you every minute of the day, say your name and tell your story- you deserve that. There was me before you, and there was someone completely different staring back at me now. 

I was told to join a support group for mothers who had been through this- a group that was so secretive you have to not only give them a copy of your driver’s license, but also health records and/or a death certificate. The fact that there are so many cruel people in this world that try and make me feel guilty about my mercy for you. So many moms who would rip their own hearts out so that their children would live. Mommy’s like me who had to be so strong and take the pain so that babies like you wouldn't have to. 

Two months have passed now, I now feel that you are with me. I see the woman you brought to me who shared her loss on a day I needed it the most. I see the dove you sent me to sleep on my roof. I see all of the signs- I know that's you. I once questioned God’s pity over me- would he forgive me? I see now that he is with you. I learned so much about myself and about the people around me. I learned that I do have a tribe of people I can call on and who will reach for me, sometimes just to listen. I have re-bonded with my daughter in a way I couldn’t imagine. While I've always been thankful for her- I hold her a little tighter and a little longer now. 

I met my therapist, Monica, who helps me weekly- I am so thankful for that help. And I learned that real kindness does exist, kindness sometimes from strangers. But, I also learned the harsh reality that I am not alone. But importantly, I learned to trust God again. Those sonograms, those doctors; all were put in front of me so that you didn't have to feel any pain. Know that when I talk about my life, you will always be a part of that story. Please know that Mommy will always love you.

- Lauren