Early Detection Matters: Parents Should Not Find Out About Their Child's Heart Defect from the Coroner.

I first heard the phrase "congenital heart" from the coroner. My own OB told me it was rare. Obviously, there's a big disconnect. While 1 in 100 isn't exactly common, it's not rare either. Congenital heart disease is the most common birth defect and sadly one of the leading killers of babies and children.

About half of the cases of CHD are diagnosed via ultrasound in utero. That number varies widely depending on where you are, something I'd like to see more uniform and closer to 100 percent. The earlier a baby is diagnosed, the more likely the baby will survive.

Since shortly after Cora's death, I've advocated for pulse oximetry newborn heart screening. It's a non-invasive, cheap and effective way of catching some of these heart defects. It's a basic vital sign and a no brainer. I successfully advocated for Cora's Law in Indiana, making pulse ox standard, and have tried to help others in other states do the same.

I urged pregnant friends to ask about the screening. I urged friends to ask their pregnant friends. Soon strangers were asking strangers to get the screening. I know that thousands of babies have been screened because moms asked after hearing about Cora. I know that lives have been saved.

I know that we can do even better. It's time to make the next push in this battle. I'm going to focus on getting the message out to parents and caregivers in two more areas: Knowing the signs and symptoms and pushing for better ultrasound detection, this goes along with pulse oximetry screening.

Moms are the driving force behind pulse ox screenings. Moms standing up and demanding better for their babies. I'm calling on you again.

Ask about your baby's heart at the mid-pregnancy ultrasound. 

Take this document with you to your ultrasound. 

Think HEART. Know the signs and symptoms of heart defects in babies. 

The Think HEART campaign was developed by Dr. Joan LaRovere from the UK in conjunction with the Children's Heart Federation. I've gotten permission to bring their materials to the U.S. because I think it's a wonderful way to reach parents and caregivers with the signs of a CHD. 

So what are the signs of a possible heart defect? Heart rage, energy level, appearance (blue or dusky), respiration, and temperature (cold to touch). HEART. 

Of course if your baby has one or more of these, it doesn't mean a CHD is definitely the cause. Call your doctor's office if you notice any of these. It's important to remember a child with a CHD might not exhibit any symptoms. 

Ask about newborn heart screening (pulse oximetry)

Pulse oximetry screening for critical congenital heart disease is an effective way to catch many of the most lethal CHDs. Keep asking. Keep demanding. 

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Vertigo

Airports haven't been kind to me lately.

A few weeks ago I was walking through the Indianapolis airport and heard someone squeal, "Look, it's mommy!"

I looked around and around for Cora. My brain played a nasty trick on my for just a moment, and I forgot she was gone--for just an instant.

Of course I realized the said truth within a half second and my heart dropped into my stomach. I so wanted my little girl there, so excited to see me. Instead I dragged myself outside to wait for my husband, still hearing and replaying that family reunion in my mind.

This weekend I went to the happiest place on the planet--if you're a five year old, or watching your child bubble over at the sight of Mickey Mouse--Disney World.

On the flight back, I steeled myself as a family of two small children and a baby took up the seats in the row in front of me. The parents, who looked like they were barely operating after a weekend of chasing young children around Disney World, let the two young children set in the two seats in front of me along while they sat in the adjoining set of three. I shut my eyes and hoped for sleep.

Soon a family took the seats behind me. They had another baby girl. My entire world started to spin.

A woman next to me asked the family in front the ages of the children. One of the little girls was two and a half. I couldn't contain the tears that splashed from my face. Throughout the flight, she periodically poked me, shut my window shutter and proceeded to cry for the final half hour of the flight.

I just wanted to scream with her.

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Dear Cora: Ten Things You Should Know About Mommy

Dear Cora,

I've written you a few times with ten things I thought you should know about daddy. But, I realized the other day, there was so much I wanted to share with you about me. I wondered if you would pick up any of my quirks and imagined sharing the stuff I loved with you. This is my chance to do that.

Ten random facts about mommy:

1. I hate rice. If you were here, I would tell you that hate is a strong word and should be reserved for only times when you really, really mean it. I mean it. I hate rice.

2. I'm a geek, and I'm proud of it. I'd rather stay in curled up with a good book than go out. I love geeky stuff like Wordpress plugins and finding the perfect hex code for a blog design color.

3. I won the fifth grade spelling bee. See number two.

4. I've always wanted to be a writer. Thanks to you, I finally feel like I'm writing how I want, for me, and the results have been soul soothing.

5. Pickles, basil, tomatoes, mozzarella and mashed potatoes are my favorite foods. Not necessarily all together, but I might try it sometime.

6. I'm messy. Okay, so I'm an absolute nasty slob. Good thing Daddy's neat, so let's just hope you would have picked up his tidiness.

7. I knew what school I wanted to go to and had selected my intended major since I was in about seventh grade (Indiana University, journalism). I graduated with a B.A. in journalism from IU.

8. My favorite classes in college were: History of the Beatles, Yoga and Communications Law.

9. While in later years I wanted to be a newspaper reporter. I found a piece of paper from kindergarten that asked what I wanted to be when I grew up. My answer? Waitress. I served tables through high school and college and worked at a newspaper after college, so my childhood dreams were accomplished.

10. Above all, compassion and empathy are most important to me. They're my guiding values.

Love,
Mom

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Put Away the Dead Baby Card

When our babies die, you don't get to use them for your cause. It's wrong and horrible in every sense.

I've seen it happen personally more than once. I'm not going to link to posts or write names. I don't want to acknowledge them. I've seen it by more than one cause. I've seen it from natural childbirth causes, and I've seen it from those that support highly medicalized birth.

They dare to pick up on a snippet of a story about a child that dies spread on the Internet and run with it,claiming to know that the child died because of X, which is of course the opposite of their cause.

I know one blogger, who happens to be a health care provider, who even brags about handing moms "dead baby cards."

A baby's death is not fuel to your fire. A baby's death is not something to be twisted and used. I know what you're all thinking, well, if the baby died from that, it needs to be reported. Here's the evil thing, these people get the facts wrong. They read a few sentences and jump to conclusions and report it as fact.

We get to pick our baby's "cause." That is, if we even want to. Unless of course a mother hurts her baby, then the law gets to sort out justice for the baby.

Pulling the dead baby card is low and despicable. Using a deceased child for a cause that the parents don't believe in is just wrong.

I don't care if you're anti-homebirth, anti-circumcision or believe that baby's should be born in rocket ships, it's low.

You don't know the facts. You don't know what happened. You haven't researched the story. You haven't interviewed the health care providers, parents and others. Quit playing armchair detective.

Put away your dead baby card. You're just as bad as a so called "shock jock." But worse, because you're getting page views on the backs of my friends' dead babies. Stop.

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