Deans story: 5 days on Earth, forever in Heaven

September 2017: At 22 weeks I had my second ultrasound. I should have known something was wrong since the Dr seemed to take forever to make it to my room after all of the pictures were taken. After she finally came in she said immediately that what she saw on the ultrasound was abnormal and she was very concerned. The list seemed to go on and on, I tried so hard to listen attentively as my heart pounded in my chest. Everything was functioning for the time being but my son had abnormalities of the heart (specifically the Aortic arch) the spine (undeveloped vertebrae), an omphalocele (intestines stuck in the umbilical cord), and only 2 vessels in the umbilical cord instead of 3. She feared a genetic issue, suggested an amino (I declined) and mentioned “termination” repeatedly (I also declined).

I stared at my ultrasound printouts after she left. The pictures looked entirely normal to me, his beautiful profile, perfect feet and hands...I held onto the tissue box she gave me for dear life. Why is this happening??

Fast forward to December and God knows how many Drs and specialists later...there was a clear cut plan mapped out for my boyfriend and I. Baby boy needs surgery, probably a few after birth but everyone seemed hopeful and reassuring.

January 19th I went into labor, was taken by helicopter to UCLA and gave birth January 21st 2018 to my first child, my son Dean.

I didn’t hold him, they took him out of the room to the NICU within 10 minutes or so after he was born. That day he had surgery to correct the intestines stuck inside of his umbilical cord. It went well. All he needed was to heal and get strong enough for his heart surgery and after that we thought we could take him home. But they found out 4 days later that he wasn’t healing from that first surgery. The Dr needed to go in again and see inside his belly. We were concerned, but tried to stay positive.

An hour or so later 2 if his Drs came and took my boyfriend and I outside to give us updates ( or so I thought). He did his best to explain what happened in the operating room. Again I tried to focus on the words instead of the feeling of my heart dropping. My baby’s intestines were dead. There’s nothing they could do. My boyfriends voice cracked as he asked something about what are our options? Can there be a transplant? The answer is no. And the conversation was over as the other Dr stated with tears in her eyes: “this is not compatible with life”.

Our family joined us to say our goodbyes in the NICU, took pictures with him. They took his breathing tube out around 11:30pm January 25th. And he passed peacefully in our arms by 7pm January 26th. That day was meaningful for us because the entire pregnancy we hoped and joked about our baby being born January 26th because that is my boyfriends birthday. It hurts so much that that was the day he passed but my boyfriend has repeatedly said that he is glad and grateful to have been able to hold our baby on his birthday.

It’s been 6 months and I continue to think about him every day, working and staying busy helps but there are days when the memories of his last breath torment me to the point of panic attacks or uncontrollable sobbing. I want to focus on the future. I want to be a mother again. Having another baby can’t heal us. Nothing can, but parenthood is something we have both wanted our whole lives. I can’t help but imagine how happy it would be to show our future children all of the pictures and videos we have of their older brother, and to able to talk about him openly, without unbearable pain.

2 Replies

  • Hi Jasmine and welcome to Share. I'm so very sorry for the loss of your precious boy Dean. I can't imagine all that you have been through. Please give yourself permission to grieve and remember your sweet boy. I can't begin to understand the depth of your loss, but many here at Share have been where you are. We will all be with you as you walk this new life path you've found yourself on.

    Sending you hugs and prayers for peace in your heart.

  • Welcome to Share. I am so very sorry for the loss of your son, and that you have found yourself here. I lost my first baby to Trisomy 18, 11 years ago. I think its great that you're staying busy, but please know its okay to take time for yourself, to grieve the baby that you lost. Many of our friends and family just can't understand what the loss of a child does to us. Be gentle with yourself, allow your feelings to have merit and know you are not alone. Sending you so much peace.
    Love and Hugs