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My Baby Was Misdiagnosed with Trisomy 18

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“If the baby is born, she likely won’t make it to her first birthday.”

I could already feel her kicking inside me when our doctor told us the news.

It was just after our anatomy check and gender reveal appointment. The ultrasound took what seemed like forever. We were in the room for more than 45 minutes. When the sonographer told us our baby was a girl, I was so happy, I cried. I had dreamed of a little girl with dark hair and squinty eyes, just like her dad. But when the sonographer asked me if I had done the genetic screening, I knew something was wrong.

Once the doctor came in the room, there was a distinct lack of candy coating. No bushes to beat around. “Do you see these dark spots on your baby’s brain?” she asked. “Those are a distinct marker for Trisomy 18.”

She said it like I should know what Trisomy 18 was. My husband’s face turned white. He’s a physician, so he knew.

About 2,500 pregnancies in the U.S. are affected by Trisomy 18. Most of those babies don’t survive the second or third trimester. Those who do face heart defects, kidney problems, clenched hands, clubbed feet, and several developmental delays.

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Just a few weeks before, my husband and I had opted out of the genetic test we were offered at the 12-week appointment with little thought. We had a quick conversation that went something like this: we’re not going to terminate no matter what, so what will be will be. We didn't even consider life-threatening abnormalities.

The next 48 hours consisted of inconsolable crying, praying, worrying, and not talking to any of our family about the possibility that we would lose this tiny baby girl we hadn’t even met yet.

My husband, who was on break from his department at the same hospital, went back to work. I got my blood drawn for a quad screen test, which would let us know for sure about Trisomy 18, and somehow ended up in bed, though I barely remember seeing the road on my 20-minute drive home.

It took the longest two days to hear back about the screening results. And while waiting, at home, I did my own research.

I learned there are a small number of T18 babies that are able to survive into their twenties and thirties, though developmental delays mean they need constant caregiving. I’ve since learned a friend’s brother, in his early twenties, was born with Trisomy 18. He’s happy, has a job and more Facebook friends than I do.

On day two of waiting, I emailed the doctor first thing in the morning. Nothing. By the end of the day, I called her office.

The quad screen came back, and it was good news. No indication that my baby was likely to have Trisomy 18 or any other chromosomal abnormalities. In fact, the doctor said, it was likely that the baby’s brain hadn’t fully developed and those “dark spots” were just places where the brain wasn’t mature.

It turned out they had scheduled my 20-week sonogram at 17 weeks, and I just showed up when I was told to. Had I known that coming in early would mean I was going to be told my baby could die and that I would spend the next two days in a tear-induced fog, I would have demanded to come in at 20 weeks or later. And I may have even opted for the genetic tests.

According to the American Pregnancy Association, women who have a family history of birth defects, are over the age of 35, have diabetes, use harmful medications, have had a viral infection during pregnancy, or have been exposed to high levels of radiation should take the test. None of those applied to me and likely won’t during my next pregnancy, but the test is easy and could save days and hours of agony. So with clear 20/20 hindsight, my husband and I will do the quad screen test in future pregnancies.

The test determines your likelihood of giving birth to a baby with Trisomy 21 (down's syndrome), Trisomy 18 (Edward’s syndrome) or any other chromosomal abnormality. It also helps you plan ahead for the future. The APA says this test is essential in helping parents of children with chromosomal abnormalities find potential interventions to help their babies, like fetal surgery for spina bifida. It also gives them the time they need to plan for a child with special needs, find a support group and address lifestyle changes. The quad screen also gives parents the opportunity to decide if carrying a child with such abnormalities to term is right for them.

The case for the quad screen is simple: it doesn’t hurt mom or baby; and whether you choose to learn the gender of your baby or not, you will find out if there are any physical markers for chromosomal abnormalities at your anatomy scan sonogram. Doctors need to know so they can be prepared; you need to know so you can be prepared. If for some reason, your sonographer finds a physical marker for a fatal abnormality, you’ll want to have those quad screen results in your back pocket.

And for parents who are just learning their baby suffers one of these abnormalities, there are so many support groups online and likely in your area. Check out trisomy18.org, trisomy.org or trisomy18support.org. Connect with other parents in similar situations and find a friend to take you to coffee who will empathize, support and be there for you.

I’m now nearing the end of my pregnancy, and I return to the sonographer every 3-4 weeks to rescan the baby’s brain. By week 21 though, her sweet little brain was perfect. I can’t wait to fill it with Otis Redding and all the names we call our golden retriever and, when she’s old enough, with J.D. Salinger short stories.

Photography by Hannah Leigh Photography.

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If there's one thing you learn as a new mama, it's that routine is your friend. Routine keeps your world spinning, even when you're trucking along on less than four hours of sleep. Routine fends off tantrums by making sure bellies are always full and errands aren't run when everyone's patience is wearing thin. And routine means naps are taken when they're supposed to, helping everyone get through the day with needed breaks.

The only problem? Life doesn't always go perfectly with the routine. When my daughter was born, I realized quickly that, while her naps were the key to a successful (and nearly tear-free!) day, living my life according to her nap schedule wasn't always possible. There were groceries to fetch, dry cleaning to pick up, and―if I wanted to maintain any kind of social life―lunch dates with friends to enjoy.

Which is why the Ergobaby Metro Compact City Stroller was such a life-saver. While I loved that it was just 14 pounds (perfect for hoisting up the stairs to the subway or in the park) and folds down small enough to fit in an airplane overhead compartment (you know, when I'm brave enough to travel again!), the real genius of this pint-sized powerhouse is that it doesn't skimp on comfort.

Nearly every surface your baby touches is padded with plush cushions to provide side and lumbar support to everything from their sweet head to their tiny tush―it has 40% more padding than other compact strollers. When nap time rolls around, I could simply switch the seat to its reclined position with an adjustable leg rest to create an instant cozy nest for my little one.

There's even a large UV 50 sun canopy to throw a little shade on those sleepy eyes. And my baby wasn't the only one benefiting from the comfortable design― the Metro is the only stroller certified "back healthy" by the AGR of Germany, meaning mamas get a much-needed break too.

I also appreciate how the Metro fits comfortably into my life. The sleek profile fits through narrow store aisles as easily as it slides up to a table when I'm able to meet a pal for brunch. Plus, the spring suspension means the tires absorb any bumps along our way―helping baby stay asleep no matter where life takes us. When it's time to take my daughter out, it folds easily with one hand and has an ergonomic carry handle to travel anywhere we want to go.

Life will probably never be as predictable as I'd like, but at least with our Metro stroller, I know my child will be cradled with care no matter what crosses our path.

This article is sponsored by Ergobaby. Thank you for supporting the brands that support Motherly and mamas.

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Kim Kardashian West welcomed her fourth child into the world. The expectancy and arrival of this boy (her second child from surrogacy) has garnered much attention.

In a surrogacy pregnancy, a woman carries a pregnancy for another family and then after giving birth she relinquishes her rights of the child.

On her website, Kim wrote that she had medical complications with her previous pregnancy leading her to this decision. “I have always been really honest about my struggles with pregnancy. Preeclampsia and placenta accreta are high-risk conditions, so when I wanted to have a third baby, doctors said that it wasn't safe for my—or the baby's—health to carry on my own."

While the experience was challenging for her, “The connection with our baby came instantly and it's as if she was with us the whole time. Having a gestational carrier was so special for us and she made our dreams of expanding our family come true. We are so excited to finally welcome home our baby girl."

A Snapchat video hinted that Kim may have planned to breastfeed her third child. What she chooses to do is of course none of our business. But is has raised the very interesting question, “Wait, can you breastfeed when you use a surrogate?"

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The answer is yes, you sure can! (And you can when you adopt a baby, too!)

When a women is pregnant, she begins a process called lactogenesis in which her body prepares itself to start making milk. This usually starts around the twenty week mark of pregnancy (half way through). Then, when the baby is born, the second phase of lactogenesis occurs, and milk actually starts to fill the breasts.

All of this occurs in response to hormones. When women do not carry a pregnancy, but wish to breastfeed, they can induce lactation, where they replicate the same hormonal process that happens during pregnancy.

A woman who wants to induce lactation can work with a doctor or midwife, and start taking the hormones estrogen and progesterone (which grow breast tissue)—often in the form of birth control pills—along with a medication called domperidone (which increases milk production).

Several weeks before the baby will be born, the woman stops taking the birth control pill but continues to take the domperidone to simulate the hormonal changes that would happen in a pregnancy. She'll also start pumping multiple times per day, and will likely add herbal supplements, like fenugreek and blessed thistle.

Women can also try to induce lactation without the hormones, by using pumping and herbs, it may be harder but some women feel more comfortable with that route.

Inducing lactation takes a lot of dedication—but then again, so does everything related to be a mama. It's a super personal decision, and not right for everyone.

The important thing to remember is that we need to support women and mothers through their entire journey, no matter what decisions they make about themselves and their families—whether Kardashian or the rest of us.

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If you looked at the recently released list of top baby names from the Social Security Administration and thought, Those aren't popular around here, you're probably right.

While Emma and Liam are the top baby names for the entire country, when we break it down by state, the lists change.

For example, the third most common boys' name in California—Sebastian—is ranked 18 nationally, and Lucy gets the spot 51 overall, but is the fifth most common girls' name in Utah.

Skylar is in the top 5 in Mississippi but way down in the fifties nationally, and Easton is super popular in North Dakota, but is ranked 66th across the country,

Is your name pick in the top five for your state? Check out this list Motherly pulled from SSA data.

Here are the top five baby names for every state in America:

Alabama:

William, James, John, Elijah, Noah

Ava, Olivia, Harper Emma, Amelia

Alaska

Oliver, Logan, Liam, Benjamin, Michael

Aurora, Amelia, Charlotte, Olivia, Sophia

Arizona

Liam, Noah, Sebastian, Benjamin, Oliver

Emma Olivia, Mia, Isabella, Sophia

Arkansas

Noah, Elijah, William, Liam, Oliver

Ava, Olivia, Emma, Amelia, Harper

California

Noah, Liam, Sebastian, Mateo, Ethan

Emma, Mia, Olivia, Isabella, Sophia

Colorado

Liam, Oliver, William, Noah, Benjamin

Olivia, Emma, Charlotte, Evelyn, Isabella

Connecticut

Noah, Liam, Benjamin, Logan, Lucas

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Olivia, Emma, Isabella, Charlotte, Ava

Delaware

Liam, Noah, Mason, Logan, James

Ava, Isabella, Charlotte, Olivia, Sophia

District of Columbia

William, James, Henry, Alexander, Benjamin

Ava, Olivia, Elizabeth. Emma, Charlotte

Florida

Liam, Noah, Lucas, Elijah, Logan

Isabella, Emma, Olivia, Sophia, Mia

Georgia

William, Noah, Liam, Elijah, James

Ava, Olivia, Emma, Amelia, Isabella

Hawaii

Liam, Noah, Elijah, Logan, Ethan

Emma, Isabella, Aria, Mila, Olivia

Idaho

Liam, Oliver, Henry, William, James

Olivia, Emma, Evelyn, Harper, Charlotte

Illinois

Noah, Liam, Oliver, Benjamin, Alexander

Olivia, Emma, Ava, Isabella, Sophia

Indiana

Oliver, Liam, Noah, Elijah, William

Emma, Olivia, Amelia, Charlotte Ava

Iowa

Oliver, Liam, Henry, William, Owen

Harper, Evelyn, Emma, Charlotte, Olivia

Kansas

Liam, Oliver, Henry, William, Mason

Olivia, Emma, Charlotte, Evelyn, Ava

Kentucky

William, Liam, Elijah, Noah, Grayson

Emma, Olivia, Ava, Harper, Amelia

Louisiana

Noah, Liam, Elijah, James, William

Ava, Olivia, Emma, Amelia, Harper

Maine

Oliver, Liam, Owen, Wyatt, Henry

Charlotte, Amelia, Emma, Harper, Olivia

Maryland

Liam, Noah, William, Dylan, Ethan

Ava, Olivia, Charlotte, Emma, Sophia

Massachusettes

Benjamin, Liam, James, Lucas, Wiliam

Emma, Olivia, Charlotte, Sophia, Isabella

Michigan

Noah, Oliver, Liam, Benjamin, William

Olivia, Ava, Emma, Charlotte, Amelia

Minnesota

Henry, Oliver, William. Liam, Theodore

Evelyn, Olivia, Charlotte, Emma, Harper

Mississippi

John, William, Noah, Elijah, James

Ava, Olivia, Emma, Amelia, Skylar

Missouri

Liam, Oliver, William, Henry, Noah

Olivia, Emma, Charlotte, Harper, Ava

Montana

Liam, William, Noah, Oliver, Henry

Harper, Olivia, Emma, Charlotte, Abigail

Nebraska

Liam, Henry, Oliver, William, Jack

Olivia, Emma, Evelyn, Charlotte, Harper

Nevada

Liam, Noah, Sebastian, Elijah, Daniel

Emma, Isabella, Olivia, Sophia, Ava

New Hampshire

Oliver, Jackson, Mason, Liam, Henry

Olivia, Charlotte, Emma, Ava, Amelia

New Jersey

Liam, Noah, Jacob, Michael, Matthew

Emma, Isabella, Olivia, Mia, Ava

New Mexico

Noah, Liam, Elijah, Mateo, Logan

Isabella, Sophia, Mia, Emma, Olivia

New York

Liam, Noah, Jacob, Lucas, Ethan

Emma, Olivia, Isabella, Sophia, Mia

North Carolina

Noah, William, Liam, James, Elijah

Ava, Emma, Olivia, Charlotte, Harper

North Dakota

Oliver, Henry, Owen, Hudson, Easton

Olivia, Emma, Harper, Charlotte, Amelia

Ohio

Liam, Noah, William, Oliver, Owen

Ava, Emma, Olivia, Amelia, Harper

Oklahoma

Liam, Noah, William, Oliver, Elijah

Emma, Olivia, Ava, Isabella, Harper

Oregon

Oliver, William, Benjamin, Henry, Liam

Emma, Olivia, Evelyn, Charlotte, Amelia

Pennsylvania

Liam, Noah, Benjamin, Mason, Michael

Emma, Olivia, Ava, Charlotte, Sophia

Rhode Island

Liam, Noah, Benjamin, Alexander, Oliver

Amelia, Olivia, Emma, Sophia, Mia

South Carolina

William, James, Noah, Elijah, Liam, Mason

Ava, Emma, Olivia, Charlotte, Harper

South Dakota

Grayson, Henry, Liam, Owen, Oliver

Harper, Emma, Olivia, Charlotte, Ava

Tennessee

William, James, Liam, Noah, Elijah

Emma, Ava, Olivia, Harper, Amelia

Texas

Liam, Noah, Sebastian, Mateo, Elijah

Emma, Isabella, Olivia, Mia, Sophia

Utah

Oliver, William, Liam, James, Henry

Olivia, Charlotte, Emma, Evelyn, Lucy

Vermont

Oliver, Liam, Owen, Levi, Benjamin

Harper, Charlotte, Evelyn, Emma, Nora

Virginia

William, Liam, Noah, James, Alexander

Ava, Olivia, Emma, Charlotte, Sophia

Washington

Liam, Oliver, William, Noah, Henry

Olivia, Emma, Evelyn, Amelia, Charlotte

West Virginia

Mason, Liam, Elijah, Grayson, Owen,

Emma, Olivia, Ava, Harper, Amelia

Wisconsin

Oliver, Liam, Henry, William, Logan

Evelyn, Emma, Olivia, Harper, Charlotte

Wyoming

Oliver, Logan, Jackson, Lincoln, Wyatt

Amelia, Emma, Elizabeth, Harper, Olivia

[This post was originally published May 18, 2018. It has been updated.]

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    Alaska

    Olivia, Aurora, Isabella, Sophia

    James, Liam, Wyatt, William, Noah

    Arizona

    Emma, Isabella, Olivia, Mia, Sophia

    Liam, Noah, Sebastian, Alexander, Julian

    Arkansas

    Emma, Olivia, Ava, Harper, Isabella

    Elijah, William, Noah, Liam, Mason

    California

    Emma, Mia, Olivia, Sophia, Isabella

    Noah, Sebastian, Liam, Ethan, Matthew

    Colorado

    Emma, Olivia, Charlotte, Evelyn, Isabella

    Liam, Oliver, William, Noah, Benjamin

    Connecticut 

    Olivia, Emma, Ava, Mia, Sophia

    Noah, Liam, Logan, Jacob, Michael

    Delaware

    Olivia, Ava, Charlotte, Isabella, Emma

    Logan, Noah, Liam, Mason, Michael

    District of Columbia 

    Ava, Olivia, Eleanor, Genesis, Elizabeth

    James, Henry, William, Noah, Jacob

    Florida

    Isabella, Emma, Olivia, Sophia, Ava

    Liam, Noah, Lucas, Elijah, Matthew

    Georgia 

    Ava, Olivia, Emma, Isabella, Charlotte

    William, Noah, Mason, Elijah, James

    Hawaii

    Emma, Olivia, Aria, Ava, Chloe

    Liam, Noah, Mason, Elijah, Logan

    Idaho

    Emma, Olivia, Charlotte, Evelyn, Harper

    Oliver, Liam, William, James, Mason

    Illinois

    Olivia, Emma, Ava, Sophia, Isabella

    Noah, Liam, Benjamin, Logan, Alexander

    Indiana

    Emma, Olivia, Amelia, Charlotte, Harper

    Oliver, Liam, Elijah, Noah, William

    Iowa

    Harper, Emma, Olivia, Charlotte, Evelyn

    Oliver, Liam, Henry, Lincoln, Wyatt

    Kansas

    Emma, Olivia, Ava, Harper, Evelyn

    Oliver, William, Liam, Jackson, Henry

    Kentucky

    Emma, Ava, Olivia, Harper, Isabella

    William, Elijah, Noah, Liam, James

    Louisiana

    Olivia, Ava, Emma, Amelia, Harper

    Liam, Noah, Mason, Elijah, William

    Maine

    Charlotte, Olivia, Emma, Harper, Amelia

    Oliver, Lincoln, Liam, Owen, Wyatt

    Maryland

    Ava, Olivia, Emma, Sophia, Charlotte

    Liam, Noah, James, Logan, Jacob

    Massachusetts

    Emma, Olivia, Charlotte, Sophia, Isabella

    Benjamin, William, Liam, Lucas, Noah

    Michigan

    Emma, Ava, Olivia, Charlotte, Amelia

    Liam, Noah, Oliver, Lucas, Mason

    Minnesota 

    Olivia, Evelyn, Emma, Charlotte, Nora

    Oliver, William, Henry, Liam, Theodore

    Mississippi

    Ava, Emma, Olivia, Paisley, Amelia

    William, John, James, Mason, Elijah

    Missouri

    Olivia, Ava, Emma, Amelia, Harper

    William, Liam, Oliver, Noah, Elijah

    Montana

    Olivia, Emma, Harper, Ava, Charlotte

    James, William, Liam, Oliver, Wyatt

    Nebraska

    Emma, Olivia, Amelia, Charlotte, Evelyn

    Oliver, Liam, William, Henry, Noah

    Nevada 

    Emma, Mia, Isabella, Sophia, Olivia

    Liam, Noah, Elijah, Michael, Sebastian

    New Hampshire

    Charlotte, Evelyn, Emma, Olivia, Amelia

    Logan, Henry, Mason, Owen, Oliver

    New Jersey

    Emma, Olivia, Isabella, Mia, Sophia

    Liam, Noah, Matthew, Michael, Jacob

    New Mexico

    Mia, Sophia, Isabella, Olivia, Ava

    Noah, Santiago, Elijah, Liam, Daniel

    New York

    Olivia, Emma, Sophia, Mia, Ava

    Liam, Noah, Jacob, Lucas, Joseph

    North Carolina

    Ava, Emma, Olivia, Isabella, Charlotte

    William, Noah, Liam, James, Mason

    North Dakota 

    Emma, Harper, Olivia, Amelia, Ava

    Oliver, Henry, Liam, Noah, William

    Ohio

    Emma, Ava, Olivia, Harper, Charlotte

    Liam, Carter, Noah, William, Lucas

    Oklahoma

    Emma, Olivia, Harper, Ava, Isabella

    William, Liam, Noah, Elijah, James

    Oregon

    Emma, Olivia. Sophia, Charlotte, Evelyn

    Oliver, Liam, Henry, Benjamin, William

    Pennsylvania 

    Emma, Olivia, Ava, Charlotte, Sophia

    Liam, Noah, Logan, Benjamin, Mason

    Rhode Island

    Charlotte, Emma, Olivia, Sophia, Isabella

    Lucas, Liam, Noah, Julian, Mason

    South Carolina

    Ava, Emma, Olivia, Charlotte, Harper

    William, Noah, Mason, James, Liam

    South Dakota

    Emma, Olivia, Harper, Evelyn, Nora

    Oliver, Henry, Liam, Noah, William

    Tennessee

    Ava, Olivia, Emma, Amelia, Harper

    William, Elijah, James, Noah, Mason

    Texas

    Emma, Mia, Isabella, Sophia, Olivia

    Noah, Liam, Sebastian, Mateo, Elijah

    Utah

    Olivia, Emma, Charlotte, Evelyn, Hazel

    Oliver, Liam, William, James, Benjamin

    Vermont

    Evelyn, Olivia, Charlotte, Emma, Harper

    Wyatt, William, Oliver, Liam, Noah

    Virginia

    Olivia, Ava, Emma, Charlotte, Isabella

    Liam, William, Noah, James, Benjamin

    Washington

    Olivia, Emma, Evelyn, Ava, Isabella

    Liam, Oliver, Noah, William, Benjamin

    West Virginia

    Emma, Olivia, Harper, Paisley, Amelia

    Liam, Mason, Elijah, Grayson, Carter

    Wisconsin

    Emma, Olivia, Evelyn, Charlotte, Ava

    Henry, Oliver, Liam, William, Logan

    Wyoming

    Emma, Harper, Ava, Avery, Charlotte

    Liam, Wyatt, Carter, James, Logan

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