Mom to Beatrix Elizabeth

December 13th, 2010

2:05 a.m. – 3:50 a.m.

Upstate New York

My name is Sarah, and my daughter, Beatrix Elizabeth was born on December 13, 2010. She lived for almost two hours after she was born, and was so very beautiful. I miss her so.

Beatrix was a “caboose” baby. She was to be the last child for us. Once we decided that we were going to try for another baby, it didn’t take too long to get pregnant.

Unfortunately it also didn’t take long for things to begin going terribly wrong.

At 9 weeks, during an ultrasound (ordered because I was slightly spotting), it was discovered that my little baby Bea suffered from Hydropsy Fetalis. An enormous amount of blood was taken, as the doctors assumed that I had been infected with a virus. The doctor explained that she believed that I was mis-carrying the baby. I was sent home with instructions in the case that I began bleeding in earnest.

My Baby Bea was a miracle baby, because at 12 weeks, she was still hanging on. We had a nuchal fold translucency test done, and during that test, the doctor found that the Hydropsy Fetalis was gone. Unfortunately, there was a new problem- she has a thickened nuchal fold that was evidently very, very large. The doctor was very clear that this indicated a trisomy disorder, and there was no way of knowing which one until later in the pregnancy. We scheduled an amnio for 16 weeks.

My husband and I left that appointment shell-shocked. We sat in the car outside of the doctor’s office and talked over the options. We agreed that we would carry her for as long as she would stay. We began orienting ourselves with the realities of having a child with Down Syndrome (because we assumed that was what we were dealing with- anything else was just too awful to contemplate). We had 4 weeks of believing that this baby had problems, but that in the end, we would be bringing her/him home.  I began paying attention to “special” people a bit more. I began imagining a life with this baby. We actually became excited at the thought that we were going to be adding such a special person to our family.

At our 16 week ultrasound and amnio appointment, we settled in for a long look at our baby. I was happy that we would be getting another glimpse of our little bean- I had become so attached, and fiercely protective of her/him. I loved this child already.

As the tech moved the wand around my belly, she became much less talkative. She let to get another technician, and then left again to get the doctor. He came and looked at the screen with a grim look on his face.

“Incompatible with life”.

Those are the only words I remember him saying. I have no clue what came before that, or after. We went ahead with the amnio. After that we spoke with a genetic counselor who diagnosed our daughter with Trisomy 13 based on the ultrasound images. Our daughter had a very large omphalocele and a cystic hygroma. Together, these indicate a lethal defect. They were shocked that she had survived this long, and were confident that she would not last until 20 weeks. We were sent home to wait for miscarriage (again).

The test results came back negative for any genetic defect, and I found out that this precious baby was a girl. A girl. My girl. We rejoiced. I went and bought some dresses for my GIRL… The first and only clothing I bought for this baby.

At 20 weeks, much to everyone’s surprise, she was still there. At that point, doctors realized that she most likely was going to be born, not miscarried. We began seeing a specialist, and scheduled appointments to gauge the rest of her progress. At our first ultrasound with him, he detected two more fetal anomalies that the other doctors had not shared with us. My daughter now was shown to have, dolicocephaly (a skull deformity), a clubfoot, her omphalocele, her cystic hygroma. Our care was transferred to a Children’s Hospital an hour away from where we lived, in hopes that maybe they could save her. Also, none of the local hospitals were willing to take our case, because the complications were so large.

At 26 weeks, we had our first diagnostic tests (ultrasound and fetal MRI) to be done at the Children’s Hospital. They found more anomalies. The list grew to include kyphoscoliosis, sacral agenesis, bilateral clubbed feet, and a very short umbilical cord. We finally had a name for what was wrong with our baby- Limb Body Wall Complex. This is an extremely rare birth defect. There are only four documented survivors in the world. It is considered generally lethal. It also can cause problems for the mother carrying the child.

I was told that I would have to deliver via classical incision C-section, This was due to the shortness of her umbilical cord- she could get stuck in the birth canal.

We continued on with appointments, and made preparations for our daughter to enter the world. We chose to try to aggressively treat her upon birth. We were hoping for a fifth documented survivor. Our doctors were amenable to this as long as her lung function was sufficient.

At 34 weeks, I went into spontaneous labor. I began having back pain, and my water broke. We reached to the hospital (that hour away drive took us only 30 minutes that night…).

My Beatrix was born early the next morning; she was so very, very beautiful. She was intubated, but unfortunately, because of the size of her omphalocele, her lungs were not developed enough to absorb oxygen. She was brought to me while I was still in surgery, and she passed away peacefully in my arms. I will never, ever forget what it was like to hold her for a short time. I do not regret carrying the pregnancy to term, and would do the same thing again if faced with the same situation. She was such a joy to us.

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  1. Thank you for sharing you story, Sarah. I am so sorry that Beatrix is no longer with you, but I admire your (and her!) courage and strength. You are an amazing mommy :)

  2. For anyone coming here looking for support after carrying a pregnancy to term with a diagnosis of Limb Body Wall Complex- we now have a website for connecting with others who make the choice to continue their pregnancies, with this diagnosis:

    We have a very active facebook group here:

    <3 Sarah

  3. My daughter was stillborn November 4, 2014 due to multiple anomalies as well. We knew early on that there were problems and chose to carry to term. We also hoped and prayed for something like Down Syndrome. Unfortunately she had significant problems with her lungs not being developed and combined with her other issues she didn’t survive labour. Holding her for even that brief time is the happiest and most heartbreaking moment of my life. I miss her every day.

  4. i am currently 16 weeks pregnant my baby measuring 14 weeks! at my first scan they told me there was no heartbeat! had to wait a week to go for another scan where they found the heartbeat! they saw that the head arms and legs were fine but my baby has too many anomalies! i have been offered 3 times to terminate the pregnancy i have refused each time and decided to carry on with the pregnancy! my baby is a fighter and has a very strong heartbeat still going and is growing each week at scans! i have a daughter already who is 5 and is very excited bout being a big sistet! i just hope i can get both of us through this

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