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

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. 

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Learning When It's Okay to Neither Agree or Disagree

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. 

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The Place Where Cora Lives

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. 

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On Jealousy

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.

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