"Our Little Boy Had Trisomy 13, Which Doctors Told Us Was 'Incompatible With Life'."

I found out I was pregnant in July, a couple of months after experiencing an early miscarriage. My husband, Jarrett, and I were thrilled.

This baby was an answered prayer.

We told our families soon after, who were just as excited as we were.

My first prenatal appointment and ultrasound came, and things really started to get real. Seeing our baby on ultrasound was such an unexplainable feeling.

Our baby was the size of a raspberry, less than an inch in length, but we were already so in love.

Several weeks later, we were given unexpected news.

Some abnormal lab work suggested that our baby could have a chromosomal abnormality called Trisomy 13.

Suddenly, our joy turned to fear. We were scared of this diagnosis and everything that came with it.

Neither of us knew much at all about Trisomy 13, but a quick Google search told us way more than we ever wanted to know. We felt scared to feel excitement or get attached to this baby, especially knowing that our time with him might be pretty limited.

What should’ve been such an exciting time quickly became a time that felt pretty dark.

19 weeks into my pregnancy, an amniocentesis confirmed our greatest fears.

Our little boy had a definitive diagnosis of a complete Trisomy 13, which doctors told us was considered “incompatible with life”.

We were told there was a high probability that I would miscarry at some point in my pregnancy. We were told I could possibly carry to term and then deliver a baby that wasn’t breathing at all.

We were told there was really no way to know for sure how long Myles would live after delivery. It could be seconds, hours, weeks, months.

We were also told that we had the option to terminate the pregnancy, “for medical reasons”. Jarrett and I both knew that termination wasn’t something we wanted to pursue.

We are still so thankful that the doctors walking alongside us never questioned that choice; they never pushed us to change our minds.

Myles’s story could’ve looked a lot different; but we knew that God’s plan for him was so much greater.

We knew that this little boy’s life was meaningful and full of purpose, regardless of any diagnosis he’d been given.

At just shy of 35 weeks, we met Myles.

It was too soon—a lot sooner than were expecting. But we know that God wasn’t at all surprised by the timing of things. Everything about Myles’s birthday, down to the medical team that was there to take care of us, was perfectly orchestrated by God.

When Myles was born, he was blue, didn’t have much of a respiratory effort, and his heart rate was low. We knew this was a possibility, but it was pretty difficult to come to terms with in the moment.

I felt hopeless; we needed more time.

The respiratory therapist laid him on my chest, and the sweetest, smallest cry filled the room less than a minute later. His color improved, his heart rate came up, his breathing got better.

Myles went on to live for 12 hours and 59 minutes; we soaked up every single second.

We always say that no amount of time with him would’ve ever been enough, but we are so thankful that in that short time we got to hold him, introduce him to his grandparents and some of his aunts and uncles, read him a book, and fall in love with his little personality.

He weighed less than 4 pounds, had 11 perfect fingers and 12 perfect toes, a head full of golden blonde hair, and, because of his cleft lip and palate, he had two teeth that had already erupted.

He was precious and he was such a fighter. Our lives are forever changed because of Myles.

It would be so easy to hear his story and feel saddened by it. It sounds painful, and trust me, there are times when it is.

But we don’t want Myles’s life to be marked by sadness. he brought us immeasurable joy from the moment we first found out I was pregnant.

We know that we will continue to find joy in who he was and the miracle that was his life.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” - Psalm 139:13-139:14

This blog was written by Emily Logan in Baton Rouge, Louisiana. She has been with her husband, Jarrett, for ten years and married for six. Together they have 3 children - Myles, Lainey, and Peyton.

"We Laid to Rest a Million Hopes and Dreams in One Tiny Ceremony."

As we entered the hospital this afternoon on our way to the OR prep room, I was somewhat surprised by how I felt. Both Jessica and I had a peace that God was with us and it was going to be okay.

I was extremely mournful but didn’t feel fear or a sense of dread. They prepped Jessica and as they did, I had many tears thinking about what was going to come soon.

Especially hearing Birdie move on the monitor, it was hard not to think about her life coming to an end soon.

A short time later, they wheeled Jessica to the operating room and began the procedure. At 5:46pm, Birdie was born at 2 lbs, 10 ounces and 14” long. She had a slow but steady heartbeat and we immediately held her in our arms to give her our love and warmth.

When we first purchased our land, we had a dedication that involved water, oil, salt and wine and I’ve kept small vials of each of them as a remembrance since.

This morning, I felt led to take that small vial of water from the home and brought it with me to the operating room.

As Birdie lay in our arms, I gently christened her and we dedicated her to the Lord, letting her know that before God, we were so very honored and blessed that he chose us to be her parents.

We declared her as his child and prayed over her.

As the doctors wrapped up, the nurses checked her heartbeat several times. Even though we couldn’t see her breathing, her heart remained beating slowly but surely.

Back in the recovery room, we had the children come in and each of them got to hold her for a short time. We wished her a happy birthday with a song and a special cake, beautifully adorned with her name.

We spent the next thirty minutes holding her and sharing her with a few family members. It was such a grace-filled time of peace in honoring her while she was with us.

As the kids moved towards the door to leave, I took Birdie and went to give her to the neonatologist to have her vitals checked again.

However, as her siblings left the room, Birdie had chosen that moment to respond to the loving call of her Savior and leave Jessica and me in the room, not alone but with God’s presence, hanging in the room like a thick fog.

As we held Birdie and cried, Hillary Scott’s song “Thy Will” began to play and we simply sat and soaked in the words that the Spirit was saying through us to God.

Thy will be done

Thy will

I know you see me

I know you hear me, Lord

Your plans are for me

Goodness you have in store

I know you hear me

I know you see me, Lord

Your plans are for me

Good news you have in store

So, thy will be done

She had been with us for an hour and twenty-four precious minutes but in the very second she left us, she crawled in to Jesus’ arms and He gave her all the love of a lifetime with us in that single moment with him.

Even now, as the tears continue to come, we have such a peace and are so thankful for our time carrying her and with her today. God is so good.

In a sacred and intimate ceremony, our family of five buried Birdie on our land. I’ve never been more thankful for our property.

On the land that God provided, we tucked away an intricately carved wooden box holding the intricately woven body of our daughter into the soil.

We laid to rest a million hopes and dreams in one tiny ceremony but knowing our daughter is fully healed with Jesus is the consolation that brings us comfort.

Finding a new routine and a new "normal" that does not include our sweet Birdie breaks my heart. Though I no longer carry her in my womb nor will l get to carry her in my arms through the years, her presence in my heart is so very real.

It's all still so fresh in my mind. Her sweet baby face, the smell of her newborn clothes, holding her tiny hand as I cuddled her in the hospital room.

Part of me is scared for all of it to fade, as weeks become months and years.

For each milestone to pass without her here. There will always be a Birdie shaped void in our everyday life.

Our family will never be whole until we reunite in Glory.

The Gospel has been made even clearer to me through all this; Christ truly saved us from so much - how amazing that even death won't separate us from Birdie forever. We will hold her once more.

This blog was written Jeff Beecham in Dallas, Georgia. He has been married to his wife Jessica for 14 years. Together they have 4 children, Stone (7), Rosie (4), Ranger (2) and Birdie, in heaven.

"Our Baby Had a Diagnosis of Limb-body Wall Complex."

Mother of Emerald:

I found out I was pregnant in September of 2022. This was our first baby so we were very excited.

At our first appointment, all of the testing they did went well and we were able to do our first ultrasound. The baby was measuring at about 9 weeks and the heartbeat was strong and healthy. While we were there we set up appointments for November and December.

A few days after our first appointment, I received a call from the doctor's office asking if I could come in to do another ultrasound before my appointment in November. I asked if this was normal and if everything was okay. The receptionist told me this was pretty common and there weren’t any notes indicating any red flags so I didn’t think about it too much.

We were 12 weeks for this ultrasound. We went in so excited to see our baby.

The ultrasound tech was very quiet the whole time and the energy in the room felt very heavy.

I didn’t have the courage to ask if everything was okay but we would get that answer right after the ultrasound was over. She told me to clean up and get dressed and she would be right back. She took us to another room and said a doctor would be coming to talk to us. I knew it wasn’t good, this was just supposed to be an ultrasound.

He came in and told us that they saw abnormalities that they had never seen before. They were going to send a referral to a perinatal doctor who would later tell us that our baby had a diagnosis of Limb-body Wall Complex.

I really didn’t need another doctor to confirm what I already knew God was asking me to do. I was going to carry this baby and this baby was going to die.

Of course the doctors told us our options - terminate or continue. They were confident there was no risk to my health or our future babies if I chose to continue. They also told us that my baby wasn’t in any pain despite the diagnosis. They warned us about possible miscarriage and preterm labor.

We loved this baby so much already.

Termination was not an option. I didn’t want to live the rest of my life carrying shame and guilt and a thousand what if’s. The God we believe in is the same yesterday, today, and forever and I knew that He loved this baby even more than we did.

I knew that while I carried this baby, He would carry all of us through.

We found out the gender through the genetics testing that our perinatal doctor wanted us to do - "it’s a girl!" Her due date was in May and through that we found her name, Emerald. It’s the May birthstone and is a symbol of rebirth. We knew that she was going to be reborn in Heaven. Her middle name is Sky because she will always be our baby in the sky.

Overall, the pregnancy was physically easy. I didn’t have that many pains or sickness until I got to the third trimester.

We had to do lots of blood tests for various reasons, we got to do lots of ultrasounds and even did a fetal MRI. Through all of it, I never prayed for a miracle of healing. It was not because I didn’t believe God could do it. I just continually prayed, “Your will be done.”

I didn’t want to spend the whole pregnancy begging God to do something and then get to the end of it and be angry with Him if He did not answer my prayers.

I needed Him to be close to me during the pregnancy and I didn’t want to push Him away after she was born. He also told me in a multitude of ways that she was going to be going to Heaven and I firmly believed what He was telling me.

I went into labor at 34 weeks.

Because this was my first pregnancy and because I had been in so much pain since the start of the third trimester, I didn’t really know if I was in actual labor. We drove down to the hospital which is 2 hours away. I walked all the way from the parking garage to OB triage, talking to my husband the whole time.

When they checked me, I was 8cm dilated.

I began to sob when I realized that today, April 19th 2023, was the day I was going to say hello and goodbye to my daughter.

They checked me at 9:15am and Emerald was born via c-section at 10:17am. The only time my husband left my side was to go see her as they cleaned and wrapped her up.

He immediately came back and said, “she’s beautiful, baby.” He was absolutely right. She was born breathing and lived for 12 minutes. She went to meet Jesus while on my chest with her father holding us both. It was quite possibly the most peaceful thing I have ever experienced. All she knew was love.

The 8 months we got with her were a true gift.

God may have not given us a miracle of healing but He gave us the only miracle that really mattered in the first place - her.

I never fully appreciated how grief and joy, so much joy, could dance perfectly together until I had to go through this.

The love I have for her fills me completely. The depths in which I miss her humbles me. But my hope stays firmly in Jesus and my eyes are fixed on Heaven.

“The Lord gave and the Lord has taken away; blessed be the name of the Lord.” Job 1:21

This blog was written by Kamea DePanfilis in Northern Arizona. Kamea and her husband, JJ, have been together for almost five years. Their daughter, Emerald, is their only child but they have a dog named Daisy.