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  • Writer's pictureMother of Wilde

"Our Baby That We Had Constantly Prayed and Wished For Had Trisomy 18."

After the birth of our third daughter, I constantly felt like there was another excited spirit that was eager to come to our family. After a year of trying and a miscarriage, we were pregnant and that feeling of a missing person in our family went away.

They were here and we were excited to have our fourth child.

We did the NIPT at 11 weeks, our first time doing that test with any pregnancy, and received the results four days before Christmas in 2022.

Our baby that we had constantly prayed and wished for had Trisomy 18.

Not just a baby, our fourth daughter.

That Christmas was unbearable. If it wasn’t for our three older daughters, I am sure my husband and I would have skipped it altogether.

How could we celebrate the birth of a baby? How could we celebrate the birth of Christ when we are about to go through the hardest few months of our lives?

My husband and other family members were hesitant to accept that our baby girl, Lydia, would even have trisomy 18. She only had a 14.7% probability of having it. People were praying for a miracle.

All the while the song “Mary did you know” kept playing during the holiday season. Of course Mary knew! She knew she would watch that beautiful baby grow up. She knew she would watch Him face unspeakable burdens and perform unthinkable miracles.

She knew she would watch Him suffer for our sins and she knew that she would watch Him die. She had to of known. And I knew from very early on that Lydia wasn’t mine to keep in this mortal life.

After the holidays, we had several ultrasounds with a maternal fetal medicine specialist. Each one making her chances a little higher of having Trisomy 18, but nothing concrete. We opted to do an amnio to find out without a doubt if we were going to get to keep our girl or send her back home before we were every ready to.

I had an amnio on Valentine’s day and received the results on my 30th birthday. Full trisomy 18. The geneticist told us not to stress too much though because it wasn’t genetic, just a random happenstance. As if the thought of another child would help anything at that point. As if losing her would be any easier.

The doctor’s appointments that followed all had talks of termination.

As the weeks went by, the list of states that allowed late term termination grew shorter and shorter. After those weeks passed, our talks went from termination to what our plans are when she passes away.

Only one doctor I went to called my Lydia what she is, my baby. My daughter that I love. With her perfect button nose and chubby cheeks.

The care I received wasn’t the worst, but there is also such room for improvement when families decide to carry their terminal child.

It was hard to not be angry at God. We didn’t get our miracle. Several testimonies of God were shaken, and I felt the weight of that. It was hard to pray. Hard to open myself up to a person who I knew couldn’t do anything to change my situation. Not couldn’t, but wouldn’t.

New parents mom and dad holding their newborn daughter with trisomy 18

We were studying the miracles of Jesus at the time we received Lydia’s amnio results. My oldest daughter was confused as to why Jesus could heal all these other people with serious illnesses, but not our Lydia. She would always ask me, “Why does Lydia have to die? Why do bad things happen to good people?”

I gave age-appropriate answers to a 7 year old who had a million questions that I couldn’t answer fully. My kids were having to grow up too fast. Something that I never wanted to happen to them.

It took a while to actually accept God’s help and bend my stubborn will to His. But once I finally did. Once I finally realized he didn’t throw me in the fiery furnace to sit alone, but to sit with me. The flood gates opened, and we received so many incredible blessings and miracles that I still cannot explain.

I had always wanted a birth photographer for Lydia’s birth. I wasn’t super thrilled with a stranger being there because we didn’t know if she would be born alive or not. I just desperately wanted nice pictures of her. If I would only have 20 pictures of her in this life, I wanted them to be perfect.

I emailed many birth photographers in the area and only one was willing to help. She said she even had a videographer that would come. I was so relieved to have that need figured out. I reached out a month later to follow up and they did not respond back to me. I reached out again, and nothing. All the while they were still posting to their social media. I was broken.

Child loss memorial print framed and sitting on a table

I didn’t want to force anyone to be there on what I knew would be the hardest day of my life. I said a fervent prayer. I asked Him to help me. I didn’t ask, I think I told Him. I need this. I am doing a very hard thing and I need someone to come and take nice pictures of Lydia. After I said that prayer, I let it go. I knew He would provide a way for me.

My husband was in his intern year of his medical residency. We had just moved to a new town and, apart from my sister, I knew nobody. My husband was working 80+ hours a week over an hour away. He would have on call weekends, leaving early Friday morning and not returning until Monday night having little to no sleep.

I went to the majority of my doctor’s appointments alone or with two of my other children in tow. A constant worry of mine was going into labor when my husband was on call over an hour away. I prayed. Lord help me. Not my will, but thine be done. Please get him here quickly if I need him to be.

June 12 at 37 weeks, I went into labor in the afternoon and by nighttime, I knew I needed to go into the hospital. Of course, my husband was on call over an hour away. But by nothing other than the grace of God, there was another resident there with him, which doesn’t happen, and he was able to pass everything off and make it home in 35 minutes. That alone is a miracle in Dallas.

We made it to the hospital and anxiously listened to her heartbeat with every contraction. Praying it wouldn’t stop, but also know it would soon.

Our beautiful, strong, fierce, Lydia Emmanuelle came into this world around 3 am. Breech with an epidural that wasn’t really cutting it. I don’t get to tell that part very often.

When your baby passes away, people don’t tend to ask how they got here. She looked just like her three sisters before her. My husband and I only make one kind of person together and they are so beautiful. Even for being so small, she had the cutest rolls and chunky cheeks.

newborn daughter with full trisomy 18 being held by her dad

The nurses whisked her away to check her. Her stats immediately started failing, so they rushed her to me and put her on my chest. As soon as she was with me, she perked up and started crying. The most beautiful sound that I have ever heard.

The doctors and nurses left my husband and I alone with her as soon as they could and did a great job at not disturbing us. Anytime she was taken away from me, she started to decline, so with me she stayed.

We sang to her. Kissed her. Loved her. And with her severe heart complications, told her to let go as soon as it started to hurt.

We felt peace and love unlike anything I have felt before. I know we weren’t alone in that room. I know there were others there helping Lydia, her dad, and I.

Our Lydia stayed with us for seven perfect, loving, heartbreaking hours until she passed back into the arms of our loving Savior. As soon as she passed away, as if like clockwork, a NICU nurse came in to check her vitals.

Right behind the nurse was a photographer. She heard of our situation and asked if we wanted some pictures of her. We received the most beautiful selection of pictures of our sweet girl. Something that will always be a blessing and an answer to prayers.

Three years before Lydia’s death, my husband’s uncle was moved from his resting place to a plot right next to his parents who had just recently passed away. He passed away when he was one year old and only required half of the plot he is in. By nothing short of a miracle, three years later, our Lydia was laid to rest in the other half of his plot. By her great grandparents and great uncle, who I know are helping keep her company until I can get to her.

Missing her milestones as brought me such grief and pain. I sat in my rocking chair, where I should be rocking her, and wept. Opened my heart to God and let Him know of my sorrow and pain. In the calm after, I had the thought that I am missing them now, but I won’t always.

I will get to raise her in the next life and how great will be my joy. I won’t have to rush to soccer practice, worry about how we are going to make rent on a salary of nothing, wishing the sleepless nights away. It will be her, me, her dad, her sisters, her grandparents, her great grandparents, aunt and uncles, all getting to enjoy watching her grow up. How great will be our joy.

dad, mom and three daughters at a funeral

No earthly cares, just enjoying the eternity of Lydia that we so rightfully deserve after having to endure mortality without her.

I know God loves me. I know Jesus Christ died for me. I know He knows what it feels like for a mother to lose their child, but I also know He knows what it feels like for me to lose my Lydia.

Sometimes bad things happen to good people. Sometimes God closes a door and doesn’t open a window.

I will never understand why I didn’t get to keep my Lydia with me until I get to ask Him face to face. But I know, I know, that he doesn’t leave us to sit alone in the flames. I know He was there with me.

Crying in the closet at 3 am, hiding my tears after long days at the doctors, helping put one foot in front of the other when I forgot how to. I know He is still, just four months after Lydia’s passing, holding the pieces of my heart together until I figure out how to.

I am learning how to always feel joy and grief at the same time. Happy to be here with my three beautiful daughters I get to raise in this life, while also desperately missing the one that left us for a season.

I know, because of Him, I will see Lydia again and how great will be my joy. As her name implies, God is with us, and God was there to welcome her back home.

family at a funeral

This blog was written by Rachel White who lives in Dallas, Texas. Rachel has been married to her husband, Christopher, for ten years and together they have four beautiful daughters; Eleanor, Liezel, Emmeline, and Lydia.


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