Cora's Story

Ms.Cora Goes to Washington. My Testimony to the SACHDNC

noreply@blogger.com (Kristine Brite McCormick) — Thu, 26 Jan 2012 20:50:00 +0000

Over the past two years--largely because of parental groups like 1in100 and a whole lot of work and meetings by probably hundreds of people--screening for the condition that stole Cora's young life was recommended federally.

The Secretary's Advisory Committee on Heritable Diseases in Newborn and Children (often shortened to SACHDNC) went through an extensive process to add pulse oximetry to their recommended newborn panel. This recommendation was huge, but now it's up to the state's to follow through. Not every state screens for every condition, as you can check at Save Babies Through Screening Foundation.

Financially--and emotionally--those meetings were out of reach for me. But, today, I got to stand in front of the committee and provide comments both thanking the committee for their efforts and gently nudging for more work on the state level. Every baby needs screened with pulse oximetry.

I thought a lot about the hundreds of CHD families I've gotten to know through this. I thought especially about those mamas that found out from the coroner their child died of an undetected congenital heart defect.

I'm not one for a lot of superstition. I don't really think about Cora as being here in any entity.

Today, in that room, I felt her. Her beauty and love do remain. She was close.

My testimony:

"Dr. Bocchini and ladies and gentlemen of the committee:

It’s an honor to stand in front of you today and personally thank you for your diligence, thoroughness and swiftness in recommending screening for critical congenital heart disease to the universal newborn panel. I’d especially like to thank Dr. Rodney Howell for his leadership.

My name is Kristine McCormick. I’m mom to Cora. I gave birth to her in November 2009 after a healthy and happy pregnancy. She was the picture of good health, or so we thought.

A few days after bringing her home, I was feeding her. I looked up for a second, looked back down and she wasn’t breathing. She was gray. She was pale. We jumped into action, calling 911 and running to the car to drive her to our small community hospital. It was too late. Cora was dead. My entire world changed in that instant.

We found out from the coroner and later the autopsy report that she had CHD—problems with her pulmonary veins including suspected pulmonary vein stenosis. I didn’t even know what CHD was, much less have any idea that my daughter was born with a heart defect.

Now, a week doesn’t go by that I’m not contacted by another mom, dad or friend of a newborn that died at home suddenly and unexpectedly from undetected CCHD. Babies like Veronica, Max, Sadie, Luke, Nora, Harlow and sadly the list goes on.

I commend this committee for its work so far and look forward to the day every baby is screened for CCHD with pulse oximetry before leaving the hospital. I’m impressed by the efforts in individual states, like my home state—Indiana—where every baby is screened for CCHD before leaving the hospital. Still that list of babies lost grows and will continue to do so until every baby in every state is screened with pulse oximetry. No parent should find out about their baby’s heart defect from the coroner. Thank you."

Huge thanks to Saving Babies Through Screening Foundation for helping me get here, and their constant support.

Learning When It's Okay to Neither Agree or Disagree

noreply@blogger.com (Kristine Brite McCormick) — Fri, 20 Jan 2012 18:58:00 +0000

Grandma Cora (Ben’s grandma who I’m staying with for the month) and I have almost polar opposite views on most things. We have different religions. We are strong supporters of different political parties. I suspect on almost everything we’d disagree—except I don’t disagree with Grandma. I don’t agree with her either. I just nod and say non-committal things like, “Is that right?” or “Okay.”

I’ve learned a lot from my time here. We have extremely different views, but I can still love her. Since she’s my 100-year-old grandma by marriage, I’m not about to disagree with her like I might even my own (much younger in comparison) grandmother.

Before spending so much time with grandmother, I thought when I held a different view from someone, I needed to speak up to make sure the other person knew exactly how I felt about every little point of disagreement. After a week of nodding along and listening, I’ve learned the value of simply listening to those with whom we disagree. I don’t have to butt in and say, “But I don’t like John Doe politician.” That doesn’t mean that I agree with her by default.

I definitely don’t want to give the viewpoint that I’m suggesting we all agree with each other all the time and bury our own viewpoints and feelings—what a dull and scary world. However, not every disagreement has to be an opportunity to share my viewpoints and to try to change some else’s mind or to make sure that my view is heard.

I’ve learned a lot from Grandma Cora. No, she hasn’t convinced me to convert to a different religion, start voting for a new political party or feel a certain way about a certain group of people. Instead she’s taught me about giving space and time—even when I vehemently oppose the other’s viewpoint on a topic.

In the future, when I’m tempted to butt in with my opinion, sometimes I’ll sit back and treat whomever I’m speaking to just like I would Grandma Cora. I’ll let them express their opinion without spilling out mine. I’ll nod and treat them just as gently as I would Grandma Cora.

I hope that’s how I would have treated my Cora had she chosen a different religion, political alliance or viewpoint.

The Place Where Cora Lives

noreply@blogger.com (Kristine Brite McCormick) — Wed, 18 Jan 2012 15:07:00 +0000

When my husband came in and told me that the family wanted someone to spend a month with his grandma in Florida, I knew I was the one for the job, not just because my work is portable, but also because I needed the change. I needed the sun. I needed easy afternoons on the front porch. I needed three meals a day—all light—at routine times. I needed a world where babies didn’t die and people lived to be 100—like Ben’s Grandma, Cora’s namesake.

Even a year ago, I couldn’t have done it. A month in a place where my Cora’s name is seldom brought up, and my work for her is a mystery. “Work on the computer,” is the phrase used to describe what I do from the people here, and right now that’s just fine.

I’ve been here a week. The entire plan came together quickly. Just a few days after the idea was first mentioned I was on a direct flight from Indianapolis to Tampa.

Grandma Cora, the original Cora Mae as I sometimes refer to her, lives on her own when in Florida and gets along great, but no one wants to leave their 100-year-old grandma by herself, so my main job is to keep her company. I also escort her on her daily walk to the end of the block. I walk back with her, make sure she gets inside and then often I continue the walk, visiting a park just a block from her house with nice walking trails. Sometimes I stop to watch the birds and other animals. I try to clear my head of all thoughts and focus on each step hitting the ground. It’s wonderful medicine.

On Sunday I escorted grandma to church. She’s a really religious person. I don’t tell her that I have different religious beliefs, instead I go and soak up hers—enjoying them because they comfort her. She is 100 years old after all. I think about how she’s made it all these years and am in constant awe. I’ve never seen a 100 year old person in such good health. She’s got her mental facilities. She’s still sharp. She’s a bit hard of hearing and moves slowly. She clutches my arm when we walk somewhere not around home like into church or around the supermarket. Yes, she does her own grocery shopping and walks all around the grocery store. It donned on me that perhaps that’s why she’s made it this far, she knows holding out her hand for support isn’t a sign of her weakness. She’s frail and tiny, but oh so strong. She’s buried three boys in the past few years. Even more impressive—she raised six boys all on her own.

I go to bed within hours of the sunset and rise before it comes back in the sky most mornings because that’s grandma’s schedule. It’s extremely different than my normal schedule, but it feels great.

December is over. The hard month is finally passed. Living resumes.

I won’t stay forever in my warm little bubble where babies named Cora live to be 100, but I’ll be better and stronger for my time here.

On Jealousy

noreply@blogger.com (Kristine Brite McCormick) — Sun, 08 Jan 2012 11:08:00 +0000

I'm not a fan of the phrase, "(S)he's just jealous." I find myself using it none the less. I think it doesn't capture what I mean. I especially don't like using the phrase in relation to myself. How presumptuous and vain to assume that people spend their time envious of me.

This week, I'm learning that it's not an untruth. It's just one of those phrases that just doesn't quite capture what I mean, and what I assume others mean.

I've been lashed out at. I've been talked about behind my back in my support communities and in friendships. I hear of people making up rumors. I get nasty messages, like one earlier this week basically telling me I should leave the CHD community because my daughter died as an infant.

Rather than get riled up and start reacting and deleting and bashing people, I've been spending some time thinking about why, and what I could fix or change.

Many people told me they thought the bashing came from feelings of jealousy, but I didn't want to be so self important to believe it. Then a woman commented telling me that she's jealous that I do so much and wishes she could do more. I was so thankful for her comment. I realized that indeed it's a truth, when you have some success people start to feel envious. I referred to it as "just jealous" in this blog post, but I think that doesn't quite capture it.

I think everyone that lost a child wants their child to be remembered. I want nothing but that for any grieving parent. I think frustration arises when a child's name seems to be spoken more than other. I wish more than anything all of our children's names were spoken over and over each day. I try my best to remember and honor other children.

I think that because I've been able to carve out at least a part-time living doing advocacy/awareness work for infant death, congenital heart disease and the power of kindness, I have more time to devote. I think many, many people wish they had that time. I sacrifice a lot to do it, but maybe it appears as though I'm supported elsewhere. We live humbly. That's how I can work for free so much.

The phrase "just jealous" doesn't sit well with me for another reason. It discounts the other person's feelings. Jealousy has such a negative connotation that anyone given that label might as well be called a mean name or shunned. Most of all, being labeled as "just jealous" casts aside that person's feelings. That person isn't just jealous. That person wants to do more and is frustrated. That person might want their child remembered in a way that Cora is remembered. That person might want to go on a trip I get to go on, or have a certain amount of Facebook friends, or raise a certain amount of money. And not everyone has an equal chance. Most of the people in the CHD world have sick children and doctor's appointments and many have full-time jobs on top of all that. Many grieving parents have other children or other full-time commitments. I know when the time comes for us to have more children, and I have to step back, I'll be so wishful that I could do more like others.

I'm not going to discount anyone as "just jealous" any more. But, I'm asking for something in return. If you ever fell ill will or if my posts bring up negative emotions, go gently. Please don't breed negativity if you have envious feelings.

Sometimes I feel envious. I always try to recognize it and acknowledge it for what it is. I make sure to think and not lash out. I'm especially careful when I sense jealousy rising within.

My hope is that this post helps others sort out those emotions. They aren't fun to experience. They bring most of us feelings of being inferior, a "bad person" or anger. We can't just make them go away. But, for me, I've found that most of the time when I acknowledge my feelings of envy, they lose their power over me. Just like the woman that told me she was jealous of me. It didn't affect our relationship in the least. In fact, when she told me it helped me

I love being the voice for those who cannot speak--like my Cora. I like trying to amplify the beautiful messages sent out by others. I like quietly supporting others behind the scenes to find their voice.

Many people would ignore the negative. And, I do and have. However, I feel like if I talk about, it might make at least some of it better. Everything can come out onto the table. Negative can become positive and positive can bring change.

I've been jealous of many, many of you reading this blog. Possibly each of you at some point. I think it's a sign of just how amazing we all are. Everyone has something spectacular about them that the rest of us all wish we had, too. That's where jealousy comes from after all, wishing for what someone else has.

A Broken Van and Lessons on Persevering.

noreply@blogger.com (Kristine Brite McCormick) — Wed, 04 Jan 2012 03:27:00 +0000

Yesterday I woke up to my husband telling me our van wouldn't start. Not something I'd typically ever share on this blog, but today I am because I learned something about the new me that was created after Cora's death.

The van is our only automobile. My husband uses it for work. So, it's a pretty big deal.
Three years ago, I would have either started crying, started yelling and worked myself up in anger or sulked all day. I would have felt like it was the end of the world. More or less, I would have had a huge pity party and thought "why me?"

Something happened when Cora died. Her death was the worst possible tragedy that will ever happen to me. Nothing gets worse. I could die. I could be gravely injured and in pain, and it wouldn't be quite as bad. Not that those things aren't tough, or for some people aren't as rough or rougher than Cora's death, but on my own personal bad things spectrum, her death can't be topped. If something happens to other children, it would be just as bad, but not worse.

So those old things that seemed like a big deal? They're like nothing now.

After my husband told me, I told him, "Oh no, I'm sorry," and rolled back over to sleep. I knew there was nothing I could to help. I knew crying or getting mad wouldn't help. I knew it would get figured out. It hasn't yet, but it's still not a huge deal to me. What used to be an 8 on the freak out scale is now a 2. It just doesn't matter. He'll find a new job. We'll save up some cash. Something some way will happen.

I'm even a tad bit grateful for it breaking to show me what I suspected for awhile was true. I just don't react to the "bad" things like I used to. I'm much more calm. Endlessly more hopeful and impossibly optimistic now.

Cora gave me that. For that, I thank her.

I'm sorry it took her death for me to learn such an important lesson, but worrying endlessly about something that in perspective isn't a big deal is like running endlessly on a hamster wheel.

When something bad happens, I take comfort knowing that I'll get through. After all, I stood up, dusted myself off and started walking again after my own personal doom's day.

I decided to share and to write this with the hope that perhaps it will help someone out there see that no matter what you're facing, one day, some how, it will get better.

Today is the day

noreply@blogger.com (Kristine Brite McCormick) — Mon, 02 Jan 2012 01:38:00 +0000

If you're Facebook friends with me or follow me on Twitter, you probably already know and have read the news a few times. But, starting today, every Indiana newborn will be screened with pulse oximetry for congenital heart defects.

I think part of the reason I keep posting it over and over is that I can't believe it. The enormity of what has happened hasn't really sunk in. Every baby in Indiana will be screened for the condition that killed my daughter. Some of them will pass the screening and still have heart defects. The screening picks up a particular set of defects called critical congenital heart defects or CCHD, these are some of the most lethal. Additionally, parents will get a hand out with the signs of a heart problem in their baby, another layer of protection.

It's a tiny victory and a huge victory all at once.

If Cora hadn't died, Indiana would not be screening right now. Most likely, Indiana would have started screening, one day. In other states, advocates were spurred to start pushing for pulse ox after learning about Cora. I don't want to make this all seem like it's because of her. It's not. We've played a rather small role in the big picture of things. Annamarie from 1in100 worked at the federal level to set up support for the screening, and researchers have worked for years on this.

But, as a mom, I can't help but feel extremely touched. Because of the death of my daughter, other babies will live. Sadly, we know that this screening will at some point help detect a baby with CHD.

I can't find words. I just can't. So I just say it over and over in my head.

Maybe one day it will sink in.

Never doubt the power of one person, when that person works with many other people. Thank you, Cora. Your five days are not in vain. Your life means something, just like the lives of every single person means something. Every person, no matter how small, matters.

My Favorite 2011 Chapters of Cora's Story

noreply@blogger.com (Kristine Brite McCormick) — Sat, 31 Dec 2011 19:00:00 +0000

I'm so thankful for this space. In this space, Cora's story doesn't end with that night. Through this blog, and my work for Cora, she lives.

I've been so reflective this week, of course many of us are with the new year, but I've been especially loving this week. I think it's because 2011 was a good year. Of course, as good of a year as a person can possibly have a year after their child died, but it was still a good year. I'm excited for what 2012 will bring.

This year, Cora and I...

Marched for Babies, where I learned just how beautiful broken can be.

Spent the first few months of the year rallying for support of a pulse ox bill, and testified about the bill at the Statehouse.

Welcomed a new addition to our family.

Learned to appreciate things that were once lost.

Worked to bring understanding of what it's like to be a grieving parent.

Saw screening for CHD with pulse oximetry become law in Indiana.

Thought of ways to take Cora with us to our very first home.

We also launched new projects like: Pulse Ox Advocacy, Good In Their Name, Cora's Hopes and Dreams and Operation Healing Hearts.

May you all have a joyous and harmonious new year!

Is Grief a Mental Illness? DSM 5 Says Yes. I Say No.

noreply@blogger.com (Kristine Brite McCormick) — Fri, 30 Dec 2011 04:40:00 +0000

In America, we don't deal well with death. I won't even attempt to dissect why. This is my own personal blog and not a research paper, so I don't even need to back up that statement. If you've ever lost someone you've loved, you in your heart know I'm right.

Most likely, after a few months, or even shorter depending on the loss, you started to feel strange about grieving so vocally. Perhaps at some point you felt judged. Maybe somewhere along the line someone whispered something to you about "moving on." You might have felt shunned and treated like you were ill.

Grief isn't a sickness. It's not bad. It's not wrong. It doesn't make you a bad person. I mourn for Cora, still, and always will. But, I'm also a good, kind-hearted, sometimes funny, sometimes bratty person. I've also made it no secret that I suffer from depression and anxiety. I was first diagnosed sometime in college, so about 10 years ago. I've been on anti-depressants most of that 10 year (not when I was pregnant, interestingly).

My depression is different from grief. In fact, after Cora died, my depression has been better. I've learned new coping skills, have a purpose and drive and have learned to live with that disease.

I've fought the beast that is depression, and I've danced with grief. Grief is sad. Grief is ugly. Grief is also beautiful. Grief is love. Grief changes you, and for me, those changes have been wonderful.

There's something about going through the worst tragedy imaginable. Only it could have made me into the person that I am.

This is a long prelude, but I'm highly concerned that in the new release of the DSM 5, grief is included. Right next to other mental disorders like depression, anxiety and schizophrenia. The DSM 5 won't be published until 2013, but I feel this could have horrible repercussions to the grieving.

In the current draft, a person could be diagnosed with Major Depression as soon as a few weeks after the death of a spouse or closed loved one simply for having trouble getting up, changes in appetite and other symptoms that mimic grief.

I'm all for people talking to a therapist after grief, but labels are powerful. Inclusion into that book furthers the grief stigmas, outside negative opinions and the feeling of the bereaved that they're doing something wrong.

Grief is not a mental illness.

I stand firm in that.

I'm depressed. I'm also grieving. Confusing the two is an injustice to the mourner.

Lessons from Cora

noreply@blogger.com (Kristine Brite McCormick) — Thu, 29 Dec 2011 01:33:00 +0000

I've learned so much from Cora.

I learned that saying "it's too much" or "I'm too overwhelmed" is quite alright.

I learned that to love like only a mother can.

I learned to set aside self doubts and get to work.

I learned that each and every one of us matters and can make a difference.

I learned that a person's impact outlives their time on this planet, and our legacy is up to us.

I learned that I can smile through tears, and that's okay.

I learned to stop and watch the sunset.

I learned that I'm not superwoman.

But, in many ways, she taught me how to fly.

The Night Before Christmas for Grieving Moms

noreply@blogger.com (Kristine Brite McCormick) — Sun, 25 Dec 2011 04:41:00 +0000

Twas the night before Christmas, when all through the house
We were all up, myself and my spouse.
Dreaming of something that wasn't there.
No stockings or trees were hung with care.

We knew St. Nicolas would not be here;
No daughter to tuck into bed.
We couldn't get her beautiful face from her head.
Daddy flipping through the channels and me staring into space.
Reminders of what we were missing all over the place.

From my voice sprang a clatter.
Daddy knew what was the matter.
Back to my keyboard I dove like a flash.
Writing up an angry mash.

Thousands of mamas across the world,
All pacing the floors, hearts and heads unfurled.

Still Her Mother

noreply@blogger.com (Kristine Brite McCormick) — Thu, 22 Dec 2011 02:41:00 +0000

"I'm still her mother," I say.

"Well of course you are," the person I'm speaking to inevitably agrees. They agree, but I don't think they comprehend. I'm not only still her mother, but I'm still mothering her, and will be until I die. It's not weird or odd or unusual either. It's what us moms without our babies do.

I don't change dirty diapers. I don't laugh and giggle. I don't pick up the phone to report her newest phase or development.

I protect her memory with everything I have. I create her legacy. I make sure she's remembered. I mother her by mothering all the babies that I can help. I'm still her mother.

In many ways, she'll never grow up. But I think that's true in the eyes of most mothers. While we let our children grow and explore on their own, a tiny part of them will always be our baby. I cling to that part of Cora. That part that's always with me.

This blog is my time to mother Cora. Instead of feeding her and cooking meals, I write letters pleading for help for other babies. Instead of taking care of her when she's sick, I help other sick babies.

I'm still her mother, and I hope that now you can see what exactly that means.

Next time a grieving mom tells you they're still his mother, you'll smile a bit on the inside, know that the mom will mother her child for eternity.

Cora is forever my baby. Her memory will never fade. I can't protect her physically. Instead, my job is to protect and honor her legacy and spread her love and beauty.

Dear Cora: Daddy Makes Me Smile

noreply@blogger.com (Kristine Brite McCormick) — Mon, 19 Dec 2011 01:36:00 +0000

Dear Cora,

I haven't written to you about your daddy in a long time. I love telling you about him because it eases the pain of not getting to see you and him together a little bit. Today something happened, and I knew I had to tell you about it. It's such a sweet moment that perfectly captures who your daddy is.

Today is his birthday! To daddy, birthdays aren't a big deal, but to mommy they're a huge event. I love birthdays. My birthday. Other peoples birthday. I figure we each deserve a day to feel special and get pampered. I love feeling special, and I love being pampered. Daddy sorta plays along on my birthday, but on his birthday he always says he doesn't want anything. I usually try to make the day special for him anyways.

I told him today that it was "my husband's birthday," so a reason for me to be all excited. He kissed me gently and said, "you can have my birthday."

Your daddy gave me his birthday. It's him in a nutshell. He's so caring and giving.

I think I'll let him keep his birthday, but I'm super touched he was willing to share it with me. I'm not going to lie, this being married to the love of your life stuff rocks--two birthdays!

Here's to many more birthdays with him. I so wish I had gotten at least one with you.

Love,
Mom

Thank you, Baby Pierce

noreply@blogger.com (Kristine Brite McCormick) — Thu, 15 Dec 2011 23:26:00 +0000

UPDATE: At the end of the post

Last week while visiting Ben's family in Florida, I was explaining to one of his relatives how I can take my work anywhere and work remotely. Of course she asked, "what do you do?"

I stuttered and tripped over my words, like I always do. How do I explain what I do? I don't want to make it sound more than it is. I don't want to make myself sound more important than I am.

"I'm a consultant," I answered at first. "I....work with nonprofits... kinda..." I trailed off. Ben's dad leaned over, told her about Cora and the conversation was left at that.

I thought to myself that I'd dodged the question again, but needed to come up with a short-concise "elevator pitch" soon. Soon, my elevator pitch would become apparent. Later that week, I hopped on to check Facebook and saw a status update from my friend Mary Ellen about an extremely sick baby in my home state, Indiana. The baby needed to get to a hospital in Boston, but the transfer was denied by Indiana Medicaid. I didn't have much time. I don't even claim to have done a small fraction of the work other people did with this, but I got to work, using social media to network, make connections and spread Pierce's story in the limited time I had.

Because that's what I do now. I save baby's lives using the skills I have, through social media and writing. I'm not the most important part of the machine that got this all going. I wasn't the most effective, but after seeing all of this in action, I won't sputter when asked what I do anymore. I won't blink an eye if someone gives me an unbelieving look when I answer, "I save babies using social media and blogging." I'm proud that I'm a social media junkie and blogging nerd.

Through networking and outreach, we found a company to fly baby Pierce. In an hour and a half, the fuel for his flight (the only cost to his family--over $7000) was paid for, by blogging and Facebook moms. When the system failed baby Pierce, the love of this community stepped up. So many people played a role and helped this come together. It's an incredible feat.

Thank you baby Pierce for giving me the confidence to stand up and proudly answer "I use social media and writing to save babies" when people ask what I do.

While many, many, many moms (and dads) played a huge role in this, I have to mention these moms (and dad), who did so much. Kristen, Christie, Jonathan, Alycia and of course Mary Ellen, you save lives, too.

UPDATE: CNN coverage of Baby Pierce's story.

As of 5 p.m. December 16, Baby Pierce was on a plane, Boston bound!

My Letter to Michelle Duggar

noreply@blogger.com (Kristine Brite McCormick) — Fri, 09 Dec 2011 14:13:00 +0000

Michelle Duggar and I are quite different, but we're both part of a lonely club. My open letter to her. I hope people stop wishing her bad.

Dear Michelle:

We're a lot different you and I. You're Christian. I'm Buddhist. You live in the South. I live in the North. You believe in traditional women's roles and long skirts. I'm a feminist, but never call myself that. You believe in having as many children as you're given. I believe that the world is over populated and that having so many children burdens the Earth.

I have never judged your choices. I don't care if you have 100 children. True, I worried about your health and your children's health after your preemie, but I believe you as a woman have full control of your body and choices and know your body best. I worry about the impact to our planet from so many children, but it's none of my business how many children you have or how you raise them, as long as their safe.

See Michelle, I can have different values than you and still send you love. I can live a different way and still support you.

For all our differences, we are now part of a sisterhood. The sisterhood of baby loss. I'm sorry about your loss. I feel so bad for you that you have to do this in the public spot light.

You have many sisters in this club unfortunately. I know many of them are sending you love and light right now, and I hope you can feel it surrounding you.

I send you so many good thoughts as you prepare for your child's funeral. I'm sorry the media is downplaying your loss as a "miscarriage," as if your body did something wrong and some cells died. I know your child died. I remember your child today.

Lots of love,

xoxo Kristine

That Night Should Never Happen Again. I'm Begging for Help.

noreply@blogger.com (Kristine Brite McCormick) — Tue, 06 Dec 2011 12:27:00 +0000

Today years ago on this date, Cora died., I'm back using this space as I have often lately, begging for help.

A few days ago I read about a life saved because of pulse ox screening. I was so happy and sad at the same time. Happy the little boy was diagnosed, sad that he has a broken heart. After awhile, I just felt mad.

I'm mad that it's taking so long to get every baby in this country screened. I'm mad that if this child had not born in New Jersey, he likely would have died or suffered from brain damage or other delays.

I'm mad thinking that a simple screening might have possibly saved me from that night. Losing a child is a pain so deep that it cuts your soul into pieces and physically hurts in many days. Some days, I think that my heart might really break. I don't deserve this. And most importantly, Cora didn't deserve to suffer.

I've screamed out and written many calls to action. I've begged and pleaded. I've nicely suggested. I've set back and hoped.

Today, I appeal to every mom. Please, please, please, please take up this cry with me. This is your fight too. If you want babies to be born healthy, this is your cause.

Pulse oximetry screening for critical congenital heart disease.

New Jersey, Indiana and Maryland have passed laws. The federal government added it to the recommended panel, but not every hospital in every state is being screened. Bills are in place in some places. In others, advocates are working. As quickly as they work. As important as that work is. It's not good enough.

Babies are dying. I'm not creating hype. I'm not be sensationalistic. It's cold hard facts.

This simple little band-aid looking, cheap, non-painful device is the difference between life and death for some babies.

In New Jersey, there have already been two reported cases of babies lives saved by this screening. That doesn't count the families that didn't want to share their stories. That doesn't take into account hospitals that haven't shared the information. Just through the media, we know that these babies are alive.

If they hadn't been born in New Jersey after the mandate, they'd most likely be dead.

As a friend wrote, they are my Coras. They are as precious to their parents as Cora is to me. I'm so glad they're alive. But all too often around this country, parents are losing their Cora to critical congenital heart disease.

Pulse ox is just the start for me. I'm not stopping until every baby's heart defect is detected before birth, and definitely not first diagnosed by the coroner. But, we can't overlook this important tool.

It's coming. Don't get me wrong. Awesome strides have been made in a little amount of time. That time is not quick enough. This is a simple tool. There's a clear protocol for screening.

Moms, we must stand up. We must stand up for our newborns and tell our policy makers, legislators and clinicians that they still aren't working quick enough. Our voices can and will spur action. I promise. We have to push.

After all, every mom has their own Cora, so precious and loved to them. We owe it to them.

Here's how you can help:
1. If you live in one of the states (Pennsylvania, Tennessee or New York) with a current bill, write to your representatives in the General Assembly. Ask them to vote yes on the bill, or ask them to help push it through. Many are right now as of this writing stuck in committee. Mary Ellen from James's Project is working hard in Pennsylvania, ask her how you can help.

2. If your state doesn't have legislation, start writing your lawmakers. Write or call the Department of Health, ask if they plan to implement the federal recommendation for pulse ox. In some states, the DoH will just start implementing, no legislation needed. But, not every state will. Did you know that most states don't screen for all the conditions suggested on the federal panel?

3. If you have contacts at a local hospital, call or write and ask the hospital to consider screening every newborn.

4. Call and write advocacy groups in your state. The March of Dimes supports pulse ox screening, and testified for legislation in Indiana. The American Heart Association is putting pulse ox on their agendas in some states. Call the state chapters of these groups and ask about their plans.

5. There are tools out there to help you advocate. I created Pulse Ox Advocacy, with the help of Rachel Goldberg in the hopes of garnering more support. Please use them. Annamarie from 1in100 has been an amazing advocate, and in fact got me involved in this battle. If you're reading this and wondering about pulse ox screening for your baby, read this, download it, print it and stuff it in your hospital bag.

I know we're all busy, but a quick call, email or letter could make a huge difference.

She didn't deserve to die. She didn't have to die.

She has no voice. We are her voice. Speak out, for Cora, and the 40,000 babies born with heart defects in the U.S. each year.

Dear Cora: Your Story

noreply@blogger.com (Kristine Brite McCormick) — Wed, 30 Nov 2011 09:15:00 +0000

Dear Cora,

It's your big day. Your second birthday. If you were here, not only would you be walking steadily, but you'd be talking up a storm I suspect.

I think your about at the age where I should start talking to you about what happened. Here's everything you need to know about your story Cora.

....

On a sunny Easter Sunday, I took a pregnancy test. With much surprise, I learned I was pregnant. The next nine months were spent preparing for you with so much love.

I so loved talking to you and reading to you, too. I loved your little kicks and thought so much about the future.

On a cold rainy November evening my water broke and off we drove to the hospital.

The next day. Two years ago today in fact! You were born.

Here's where your tale gets good.

Cora, the world changed in that instant. I got it. I understood what this life is about. Love. Ohhhh that love.

You looked like you were from out of this world. You sparkled. You were by far the most beautiful site I've ever laid my eyes on. You were so special. I thought nothing so beautiful could ever exist.

I think there was a slight mistake, for just five days later, you were gone. I think dear Cora that you were just too beautiful for this Earth. I'm glad that I had that time with you before you were called back, and someone realized that they gave me you. I'm so glad that I'm your mommy.

You were so beautiful, that even though you were here less than a week, your beauty multiplied around the world. From you, love has spilled over.

Happy Birthday, my beautiful little fallen star.

Love,
Mom

Heavy

noreply@blogger.com (Kristine Brite McCormick) — Mon, 28 Nov 2011 22:18:00 +0000

My arms ache. I think it's because I don't have her to carry.

My heart hurts. My chest feels tight. From missing her.

I'm transported back to the first few days, weeks and months after her death. Even the simplest chore are too much. The dishes pile up. A trip to the grocery store seems like a huge task. I get in the car, and getting out of the car and walking into the store is so overwhelming. I make it. Drag the food home and heat something up in the microwave.

I try to explain, but can't find the words. "I'm not well..." "I'm not doing so good..." "It's hard..." I just can't find the words to describe this. This heavy, heavy grief. I haven't felt it so heavy since last year at this time.

I'm surprised that I can even breath for the weight of everything. I think that often throughout the day. And then I stop and focus on my breath, in true amazement that I can still carry on. I remember that with each breath, I'm prolonging her memory.

Today is heavy. I expect tomorrow will be. The day after that might be even worse. In fact, I expect to feel the weight from now until after the anniversary of her death.

The heaviness reminds me of her. Reminds me she lived. Two years later, and unless you've lost a child, you wouldn't understand. Two years feels like a few seconds and a million years all at once.

Even through the fog, I see so much hope all around me. I'm so glad she was here.

I've Waited Ten Years for This

noreply@blogger.com (Kristine Brite McCormick) — Thu, 24 Nov 2011 04:22:00 +0000

Tomorrow, I turn 30. My first holiday as a 30-something incidentally. Yep, I'm a turkey baby.

To be honest, I've been looking forward to my 30s for quite a few years. I always wanted to move right past that 20-something full-fledged angst into at least knowing what I want.

I spend the past ten years in a lot of turmoil, most of it internally, the worst of it caused by something external, Cora's death.

I went through the motions as a young 20-somethinger. I went out. Drank too much. Stayed out too late, but the whole time I wished it was socially acceptable for me to curl up at home with a good movie and my puppy. I'm glad to enter the time in my life where not only is it perfectly acceptable to do that, but I no longer care about outside expectations.

Cora gave me that gift, earlier than many of my peers might have learned it. She aged me. Just as my father's death as a child made me wiser than my age.

I know I won't feel differently tomorrow. I know life won't change when the clock hits midnight. Inside, it's an important milestone for me. I'm looking forward to stability and growing even more comfortable with myself.

Welcome 30s! I've been waiting for you. It's time to cherish every moment that I have.

Looking back. Moving forward. Focused on the present.

Must Knows to Protect Your Seemingly Heart-Healthy Child from Undiagnosed Congenital Heart Problems

noreply@blogger.com (Kristine Brite McCormick) — Tue, 22 Nov 2011 04:01:00 +0000

I've been asked quite a bit this week about how someone with children over a few weeks old can get their child's heart checked. I focus on screening within the first few days of life, because that's what would have helped Cora.

This week, I've been asked quite a few times because sadly the online community has been rocked by the sudden death of more than one child over a few weeks old from an undetected CHD.

I'm not a doctor. This isn't medical advice. I don't have the answer about how we can protect your children. Your doctor might tell you it's rare, and not to worry about it. But, when you read about children suddenly dying, whether athletes in high school or babies a few weeks old, you can't help but realize your definition of rare and your doctor's definition might be different. Before I went to surgery for my gall bladder, my doctor told me he was 75 percent sure it would fix the issue. I grew a bit hysterical on another doctor and demanded answers. He told me that they viewed 75 percent as a huge success. That day I learned that when your the patient, or mom, your definition of success, or rare, might be quite different than your care takers.

Know Your Family History

So what can you do to make sure your child's heart is properly functioning? Again, please, please remember I'm not a doctor. I'm going to tell you what I, as a mom, would do in your situation, with children that you believe to be heart healthy.

I'd ask my parents about heart issues in our family. I'd jot down anything that sounded like a congenital problem. If someone in my family died suddenly at a young age, I'd write that down too. I'd ask my husband about his family. I'd ask my husband's parents, and write everything down.

If there was evidence of heart problems that seemed congenital, or present from birth, in any of my child's relatives, I'd go to the pediatrician and tell her about it. I'd ask her if she'd consider ordering testing of my child's heart based on the family's history. This testing might be an echo or EKG.

If my family was absent of these problems (which my family IS), I'd realize that heart problems, while sometimes genetic, are often not genetic.

Learn the Signs of a Heart Problem

I'd read the signs and symptoms of a heart defect and think about them carefully. I'd report any of them present in my child to my doctor. I wouldn't feel silly for doing so, even if my pediatrician brushed it off. If I got the feeling that something wasn't right with my child, I'd push the issue.

Here is a great list of the signs and symptoms of CHD, courtesy of the Congenital Heart Information Network:

"Parents should be alert to the following symptoms in infancy:

Tires easily during feeding (i.e. falls asleep before feeding finishes
Sweating around the head, especially during feeding
Fast breathing when at rest or sleeping
Pale or bluish skin color
Poor weight gain
Sleeps a lot - not playful or curious for any length of time
Puffy face, hands, and/or feet
Often irritable, difficult to console

Some children with CHDs may not have any symptoms until later in childhood. Things to look for include:

Gets out of breath during play
Difficulty "keeping up" with playmates
Tires easily/sleeps a lot
Change in color during active play or sports (looks pale or has a bluish tint around mouth and nose)
Frequent colds and respiratory illnesses
Slow growth and weight gain/poor appetite
Complains of chest pain and/or heart pounding

If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist."

Protect Your Athlete

If my child was an athlete, I'd demand that my school have an AED nearby for all practices and sporting events. I'd ask my doctor about screening my athlete for heart problems.

Pregnancy and After Birth

I'd be remiss if I didn't at least mention what I'd do during pregnancy and the early days. I'd take folic acid supplements, or prenatal vitamins before getting pregnant. When I have another child (and if I don't live in Indiana still, where soon every baby will be given the screening), I'd ask my doctor to screen my baby for heart defects in the hospital with pulse oximetry. Since Cora had a CHD, I'll make sure that I have a fetal echo during future pregnancies. At my mid-pregnancy ultrasound, I'll bring this document.

I'd be determined not to live in fear. Not to hold my child back, and to enjoy life despite it all. But, I'd be so thankful for having the information in front of me, and would read everything I could.

Help Save Lives

Please pass this on to mothers, fathers, grandparents and caregivers. You might just help save a life.

About 1 in 100 babies are born with a congenital heart defect. Only half of those are detected before birth. Sometimes these problems can go undetected until adulthood. Sometimes, these problems are detected only after death, by the coroner. That's what happened to my daughter, and too many other children. I'm determined to make it end. No mother should find out about her child's congenital heart problem from the coroner.

The Club

noreply@blogger.com (Kristine Brite McCormick) — Sun, 20 Nov 2011 06:27:00 +0000

"I lost a child, too," she whispers.

"What is his name?" I ask.

Flipping through the program, I see I'm not alone, others too lost their child.

The president of the organization, she lost a baby, too.

We aren't alone. We are everywhere. We are your non-profit leaders. We are next to you in the grocery store checkout. We teach your children. We are your friend. You might be one of us. Mothers whose child died.

We can relate to each other in just a quick hug. We are bonded. We are gentle on each other. We let each other talk. We know when to shut up. We know when to ramble on when the other doesn't want to talk.

The grieving mothers club is never one I wanted to enter.

I'm here though. I'm here with some of the most remarkable women on the planet. We are strong. We are vulnerable. We are sad. We are happy. We are always missing something.

I'm so glad that we can find each other. Rather we make life-long friendships, or share a hug at an event. We are always bonded.

One in Eight Babies Enter the World too Soon. Blogging for World Prematurity Day

noreply@blogger.com (Kristine Brite McCormick) — Thu, 17 Nov 2011 19:56:00 +0000

Whenever I tell a stranger my baby died, they always either assume she was premature or ask if she was premature. With good reason, sadly so many babies born premature don't make it to their first birthdays. In fact, it's a leading cause of infant death.

Today is World Prematurity Day. I'm joining the March of Dime's Fight for Preemies.

Cora wasn't premature, but I know many parents to preemies, again not surprising because 1 in 8 babies are born before 37 weeks.

Sadie and Sawyer were two of those babies. Today, I share their stories.

My friend Michelle and husband Erik are parents to Sadie and Sawyer.

Sadie was born in March 2008. She was "only" three weeks early, as much as her mom would have liked to carry her longer. Turns out every moment in the womb is important. Sadie struggled to breath and was in the NICU. She survived and is vibrant little girl today.

Sawyer was born on June 1, 2010 after just 28 weeks in the womb. He faced a tough battle with complex congenital heart defects and passed away in his mother's arms two days later.

Today, I blog for Sadie and Sawyer.

How can you help?

If you're pregnant, do not elect for a non-medically needed induced-delivery or c-section before 39 weeks.
Support a family in the NICU with a donation to the March of Dimes.
Follow the March of Dimes on Twitter or Facebook and share their updates.
Learn more about prematurity at the Center for Disease Control website.

Smell

noreply@blogger.com (Kristine Brite McCormick) — Fri, 11 Nov 2011 05:09:00 +0000

I never washed Cora's clothes after she died. One baby blanket is locked in a safe of some of her things and the rest are wrapped in a garbage bag. I know I've mentioned this a few times. At the old, old house (Kristine speak for the house we lived in before the house we just moved out of, or two houses ago), I kept them in the laundry basket until we moved.

We became homeowners last month and moved here about two weeks ago. The living room and kitchen have been done for weeks, but I've put off touching the spare bedroom much. So many, "what should I do withs..." in there.

Tonight I came across that white garbage bag. I paused. Should I? Would they still? Will I be too disappointed if they don't? What if they do, will it send me into a spin? I untied the bag, and peaked in. I picked up the first item. Nothing. It didn't smell like her. I was disappointed.

I picked up the pink receiving blanket you can see in the picture and held it to my nose. I inhaled. Cora. It smelled like her. That magical smell. Sweet and light and wonderful.

Nearly two years later and her clothing still smelled like her. I wish I could bottle up that smell forever. But, like everything else, it's impermanent and can't stay forever.

Luckily for me, I have something better, her beauty. It will never be extinguished.

A Time to Heal

noreply@blogger.com (Kristine Brite McCormick) — Thu, 10 Nov 2011 03:45:00 +0000

After Cora died, people started to throw around the word "heal." I couldn't even understand what they were talking about. I didn't get cut. My boyfriend didn't dump me. My baby died in my arms, suddenly. It's not something you get better from.

Nearly two years later, and I'm ready to use the word "heal." Sure, I won't get better. But, I can learn to live. And I think that's what healing is about, putting the pieces back together the best you know how. I've been focusing on my breathing a lot. Doing things mindfully. More than anything, I've been doing things and focusing on the task at hand. I've cooked every night since we moved. I've done the dishes most nights. I'm keeping the house clean.

I'm spending less time working and wrapped up in advocacy work. Instead, I'm staying up late watching old episodes of The Office, giggling out loud.

I'm wrapping myself up in a little bubble where babies don't die and life is funny. I can't stay here forever. That's not how the world works. But, I deserve to spend a moment, in the sunlight, hiding from the dark.

Using the word "heal" won't dishonor Cora. It won't mean she's forgotten. It won't mean that what happened to her is less of a tragedy. To me, healing is about being healthy, in all ways. I'm eating healthy, being more active and I'm giggling lots more, all good for my health. I'll get back to the advocacy work when I'm ready to balance healing with working.

Our First Look at Cora

noreply@blogger.com (Kristine Brite McCormick) — Thu, 03 Nov 2011 19:32:00 +0000

Whenever this memory pops into my head, I get the warm fuzzies in my stomach and chest.

In my early pregnancy, my husband and I went for an ultrasound. I think I was around 10 or 11 weeks pregnant. The tech took forever to find her, and actually told me at one point I must have miscarried her. Thankfully she called in a back-up "just to see." After only a moment the new tech found Cora. My world that stopped when I was told she was lost restarted.

This was my first real look at my baby.

While we were there, Cora slowly lifted her arm and waved. I swear she waved at me. The rest of the day I spent telling everyone how my baby had waved at me.

I'm so glad I have those moments. I'm so glad she was here. As bad as the pain of losing her is, I wouldn't trade having her for a moment for not having her at all.

Dealing with PTSD

noreply@blogger.com (Kristine Brite McCormick) — Tue, 01 Nov 2011 18:35:00 +0000

In the days after Cora died I heard from more than one doctor, "It's like you've been to war." "Whatever," I thought. I've battled depression all of my adult life, and know how to kick it in the behind. I know how to deal with depression and be happy.

This is much different. Of course grief is not depression, but something else has plagued me for the past year or so. Post traumatic stress disorder.

Before I went through this, I thought it meant an occasional flash back, some nightmares once in awhile and nothing a therapy session couldn't fix. I didn't know that those nightmares would be more vivid than any others. I didn't know that I'd scream in my sleep. My husband says I do this often. I didn't know that the flash backs would come out of nowhere. I didn't know it could be this huge.

When I'm confronted with something new, I always like to research and learn more about it. It's how I cope. I learned that PTSD develops because of the brain's reaction to the trauma. The strong emotions bring it on. I decided to focus on two of my biggest issues--the nightmares and reliving that night. It seems people with PTSD often have triggers, and they try to avoid them.

Since we moved, I've tried to live more in the moment. I focus on what I'm doing and practice mindfulness. I'm eating healthier. I think I'm on the right path, so much so that I plan on going further. It's time for a break from the social media grind. I have trouble unplugging because my professional life is wrapped up in blogging, Facebooking and Twittering, but I am going to step back. I'll still blog about the process, but you'll likely either find me less other places or distancing myself.

I'm writing this to help me organize my thoughts about it all and develop a plan. I'm recognizing my PTSD, facing it and getting back to the basics of taking care of myself.