I was Told My Daughter Had Sirenomelia and was "Incompatible With Life"
Mother of Holly:
We learned we were expecting our daughter, Holly, at the beginning of December in 2021. I wish I could say we were thrilled, but at the time, we weren't. We were completely shocked and scared.
I was only 8 months postpartum after our second baby was born a few weeks premature and spent time in the NICU, we lived in a small two bedroom condo, and we were looking at having three kids under three. Over the next few weeks, though, we began to get excited about this new baby as we began to tell our families.
At the time, I knew this would likely be a semi-complicated pregnancy since my previous baby had been a bit premature. I went into spontaneous preterm labor, and there was no known cause, so we knew we were at risk of that happening again.
Despite this, everything seemed normal. Baby looked great in the first ultrasound, heartrate was always perfect, I felt about the same as I did my other two pregnancies. At 15 weeks, we went to a local ultrasound clinic to see if we could find out the gender a few weeks early. We did this with our other two kids (both boys) and loved knowing a few weeks early. However, this time, the tech wasn't able to tell us the gender. Bad luck, we assumed.
They told us to come back the next week to see if the baby had moved at all. When we came back, she was still in the same position, and this time the tech told us she was very concerned with how low the baby's amniotic fluid levels appeared to be. She was going to call my OB, and recommended I call them as well to be seen as soon as possible.
This was a shock because nothing had appeared out of the ordinary until that point. My doctors office called and made an appointment for me to be seen the same day for another ultrasound, which they would also send to the high risk doctors at a different hospital in out state, which was famous for it's maternal-fetal medicine division and NICU.
The minute I got home, I googled "low amniotic fluid second trimester". I know, it's never a good idea to google stuff, but I wanted to be prepared.
I remember my heart dropping when nearly every condition that caused low fluid that early in pregnancy ended with words like "fatal", "life-threatening", and "incompatible with life".
My doctor was also concerned with the low fluid, and said they saw something called "funneling", which was an indicator of preterm labor. So I was put on bedrest, with my anatomy scan at the bigger hospital scheduled 2 weeks from then. The high risk doctor from the bigger hospital also gave me a call, and said he wasn't too concerned about the low fluid, and was more concerned about preterm labor, and wanted to just focus on that. This gave a us a bit more hope.
At 18 weeks pregnant, I went to my anatomy scan all alone. My husband wasn't allowed due to restrictions still. I sat there for well over an hour, because the low fluid made it hard for the tech to see everything. Finally, she finished, and told me the doctor would be in after looking through the scans. At this point, I still really believed they would come in an say, "Good news! Everything is great, baby is fine, the low fluid is a fluke".
But they didn't. I could tell by the look on the doctor's face the moment she came in that it was not good.
I just remember her carefully sitting down and saying, "So... I'm seeing a lot of abnormalities".
She then went on to list everything; she didn't see a bladder or stomach. She couldn't tell if the baby had any kidneys, and if she did, they did not appear to be working. All of this explained the lack of fluid. The doctor could only see one leg, and she wasn't sure if most of the baby's lower extremities had developed at all (which would explain why we hadn't been able to tell the gender).
She finished by saying, "I'm sorry, but the prognosis is very, very, very poor". She also explained that even if there was some way to fix all of those problems, with no amniotic fluid, the baby's lungs would not develop. Even if they could do anything about her condition, she wouldn't be able to survive with how premature her lungs would be.
I'll remember feeling like I had been punched in the gut while she told me this. I didn't cry, I didn't ask questions, I just sat there in complete shock. She had me go see the genetic counselor, who explained that most of the baby's abnormalities lined up with a very rare condition called Sirenomelia. There are roughly 300 recorded cases of this condition worldwide. Not per year - period. We also had none of the risk factors associated with this condition.
We were 1 in a million.
The silver lining was that this condition was not genetic, meaning it was just a complete fluke. However, we did genetic testing anyway, just to be sure, and it came back clear. They were able to tell us that it was a girl, our first and only daughter.
Telling my husband was the worst thing. Possibly one of worst moments of my life. We grieved for about a week on our own before we shared it with our friends and family.
The rest of the pregnancy went on with weekly scans and NSTs. At the time it was overwhelming, but I'm so glad now I had so many chances to see our sweet girl in ultrasounds and listen to her heartbeat so many times. Due to our circumstances, my husband was allowed to accompany me to appointments, and I'm so glad that he also had the chance to see her on ultrasound multiple times. Due to her low fluid levels, the risk of stillbirth was very high, so our prayer was that we would be able to meet her alive, at least for a short time.
On June 15th, 2022, I was 30 weeks and 3 days pregnant. The whole day I felt "off".
Not physically, but mentally- something just kept telling me to go get checked. I had just had an appointment the day before, and we had done a full check for signs of preterm labor, and everything looked fine. No indications of labor starting anytime soon but I just felt like something was wrong.
3:30pm: I had some light bleeding. I was almost relieved. At least I had a valid reason to go in now. My sister-in-law and mother-in-law came to stay with the kids, and since the office was about to close, the nurse on the phone told me to just go to triage at the hospital.
6:15pm: I was still in the waiting room, and I felt a contraction.
6:19pm: Another one.
I should add, I have FAST labors. My second son was born 45 minutes after my first contraction. I wish I were exaggerating. So I texted my husband to come to the hospital, because I was pretty sure this was preterm labor, and went and let the nurse know. They got me into the triage room quickly, and within 30 minutes, I was in full-blown active labor. My husband got there right as they brought me up to my room. I just remember crying when he came in.
This was it, our baby was going to die within the next few hours. For all we knew, she was already dead.
We had opted out of monitoring because there was a high risk of her dying during labor, and we didn't want to hear her die. I was 9.5 centimeters dilated, but my water hadn't broken, so they were able to give me the worlds fastest epidural. Maybe they shouldn't have rushed that process but at the time I didn't care. I think they felt bad for me because they loaded me up with the medication, I was COMPLETELY numb, but again, I didn't care. I wanted to be fully aware and not focusing on the pain when my daughter was born.
The epidural slowed down the process a bit. We let our family and friends know what was going on.
9:08pm: Our precious baby girl, Holly Elizabeth, was born. She weighed 2lbs 2oz. She didn't make a sound. I was sure she was dead, but the doctor said that her cord was still pulsating so she was alive. Almost on cue, she moved her little hand and made a noise. She was so perfect. She had dark hair like mine, and the sweetest little pink lips.
My husband and I both got to hold her while she lived, and about a half hour after her birth, her perfect little heart stopped beating.
We went home the next morning without our baby. Just a little box of her things. It was the worst feeling lying down in bed knowing I wouldn't be disturbed by a sweet little newborn need to eat or cuddle. Her funeral came and went. I healed physically and the sympathy cards slowed to a stop.
Through all of this, I really expected to have some sort of faith crisis. I've been a Christian since I was 12, but I had never experienced a trial like this. Instead, I was shown God's faithfulness and goodness in a whole new light.
Losing a baby made me truly understand how much God loves us. He willingly sacrificed His only son so that we could know Him. Now that I've experienced the pain of seeing my child die, I have a small glimpse of what God went through watching Jesus suffer and die on the cross.
We also have this hope that we will see our girl again. She ran right to the finish line and into Jesus's arms. Holly got to skip the heartache of this world and open her eyes to see the face of the Savior who made her beautifully in His image.
We prayed for Holly to be healed, and God answered us. He provided her with heavenly healing, which is far better than anything that could've been provided for her on this earth. I'm so thankful God gave us the chance to know her and love her, and I'm so thankful that someday we will see her again.
We've been keeping our baby girl alive in memory by making sure our two boys know about her. We have a shelf with her picture, her handprints, and her box of stuff on display. If you ask my 16 month old where Holly is, he happily points to the shelf. My older son asks to see "Holly's box" on a regular basis and loves going to leave her flowers at her grave. It hurts my heart that we will never get to see their sibling relationship on this earth, but I'm so glad they know and love their sister anyway.
We still have a long way to go with healing, but right now, just talking about my baby girl has been the most helpful. To acknowledge her life, however short it was, and to hear people talk about her always brings a bit of comfort. She was here, she isn't forgotten, and she never will be.
Click here to read more of our blogs written by real moms like you. Real moms that have praised God through tough pregnancy prognosis'. This blog was written by stay-at-home-mom, Rachel Hopton in Rhode Island. Rachel has been married to her husband, Luke, for four years. They met in church when they were little kids and have known each other all of their lives. Together they have three children: Winston, who is almost three, Oliver, who is 16 months old, and their daughter, Holly, who is in heaven.