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  • Writer's pictureMother of Wilde

"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.

maternity photo of husband kissing wife

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.

Dad holding baby in hospital with limb-body wall complex

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.

Newborn baby girl with limb-body wall complex

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

newborn daughter with limb-body wall complex snuggled in a blanket

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.

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