Cora's Hopes and Dreams

Ask About Your Baby’s Heart at the Mid-Pregnancy Ultrasound

Kristine — Wed, 09 May 2012 02:27:44 +0000

These days, many couples are anxious to know the sex of their baby. Often they find out at a mid-pregnancy ultrasound, usually done sometime between the 18th and 22nd week of pregnancy.

That ultrasound is often the time when about half of heart parents find out their child will be born with a CHD. While these parents will never forget that day, as my friend Annamarie Saarinen said, “The only thing worse than having a child with a heart defect is having a child with an undetected heart defect.” (Hope I got that quote right Annamarie!) With early detection, some of these defects can be operated on shortly after birth, saving the child’s life. Early detection is important. It just might save your baby’s life.

So save the questions about the baby’s sex for the end of the ultrasound. Instead ask about your baby’s heart. Your questions can and DO help. In fact, several of the leading children’s hospitals suggest asking.

Don’t worry, you don’t have to memorize the questions.

Print off of one of these resources and bring it with you to your ultrasound:

Children’s Hospital Boston: Heart Health Starts in the Womb (Great PDF resource with questions to ask)

Examiner.com: Five Questions to Ask At Your Ultrasound

Children’s Hospital of Atlanta created this infographic:

The CHD group Lasting Imprint is committed to improving early screening, follow on Facebook for updates.

Newborn Screening: Read About Screening Before Giving Birth + a Cute Cora picture

Kristine — Tue, 10 Apr 2012 23:24:00 +0000

Showing off Cora's little foot. The heel prick drew blood from a tiny spot on her heel.

Before Cora was born, I focused a lot on keeping her safe during pregnancy. I got so caught up in the tests and screenings during pregnancy, I gave newborn screening little thought. I knew that a heel stick would be done and a bit of her blood taken, but thought it only tested for genetic disorders that I’d already knew about and didn’t even understand why they were doing it.

I was so wrong.

Cora’s blood was taken. Her hearing was tested. She was screened. Unfortunately, at the time newborn heart screening wasn’t mandatory. They told me that they’d send the results to my doctor in a few weeks.

Since Cora’s death, I’ve learned so much about newborn screening. I’ll be much more vigilant next time around. Most importantly, I learned that while there is a genetic component to many of these conditions, they happen in any family–including mind.

Much of what I learned came from Save Babies Through Screening Foundation, an all-volunteer run nonprofit organization.

Not all babies are screened for every condition. I learned that I should check to see what my home state screens for before baby is born.
Following up with your doctor is important. Don’t assume your doctor will give you the results. Ask at about two weeks!
Most importantly, I learned that when detected early, these conditions can be treated or prevented.

I’ve been working with Save Babies as a Blogging for Babies Ambassador, and wrote this post to share with all of you my experience. I’m a bit ashamed at just how little I knew before Cora was born, but I know that through spreading the word, I can help more mothers learn about newborn screening.

For much more information, check out the Save Babies Through Screening Foundation home page.

Or check out this video:

To get involved and help spread the word, you also can use your blog to save babies. Make sure to follow Save Babies Through Screening Foundation on Twitter to stay up-to-date.

Talia’s Story: The Family Behind the New Jersey Heart Screening Bill

Kristine — Fri, 30 Mar 2012 16:25:35 +0000

If you live in New Jersey and have a baby, her heart will be checked because of one little girl born with a broken heart. Talia’s family, including mom Rachel Goldberg successfully advocated for the screening.

Talia was sent home with a critical congenital heart defect. I’ll let her mom share her story, but because of Talia’s late diagnosis, other babies are being screening for CHD in New Jersey. I wrote to Rachel asking her to share a little of Talia’s story, which has a huge impact on baby’s everywhere.

Rachel worked with New Jersey Assemblyman Jason O’Donnell to get the screening bill introduced in Winter 2011. The bill eventually became law, and starting August 2011, babies in New Jersey were routinely screened. Within days, the first baby’s life was saved because of the legislation, which came about largely thanks to the Goldbergs.

Cora’s Story: Could you tell me Talia’s story?

Rachel Goldberg: I had a fabulous pregnancy. A mostly fabulous birth experience. The doctor told us she had a murmur before she was discharged, to make an appt. with a pediatric cardiologist, but not to worry. At four days old she went into cardiogenic shock and critical heart failure due to multiple CHDs. She wasn’t expected to survive, and we were told that post surgery, she would probably have some level of developmental delay.

CS: How did you find out about pulse ox screening?

RG: When I read Dr. Darshak Sanghavi’s blog post, I knew we had to do something. We had been active in local politics, and started lobbying legislators. We were turned down and trying to figure out next steps, when a new legislator was elected, whose son was born with a CHD. My best friend happened to be his chief of staff, and told him about Pulse Ox. All of this coincided with major support from the medical community..

CS: How is Talia now?

RG: I cried when her Pre-school teacher told me she is one of the brightest in the class. I cry every time our cardiologist shakes his head and tells us that she is a miracle. That same Dr. told us that had Talia been given a pulse ox test, she would have never left a hospital environment

CS: You’ve been so behind the scenes and humble about all this, when Talia is older, are you going to tell her how she helped NJ newborns for life?

RG: Never was there such a fabulous series of events, and so many different people invested in getting this bill passed. In the end, we didn’t play a huge role. I wish we could do more nationally, but I work full time and sometimes struggle for sanity. I am collecting as many artifacts of this journey as possible… I do think that Talia helped to save lives- but that is her contribution to the world. I just get to be her mom.

Thank you Rachel, Talia and family. As a mom that lost her child to an undiagnosed heart defect, I find hope in hearing how Talia is doing, and knowing that she’s so loved.

Talia and Rachel Goldberg. Picture courtesy of Rachel Goldberg.

“Heart Warriors” Book Review and Giveaway: The Must Read for Any CHD Family

Kristine — Thu, 29 Mar 2012 06:16:40 +0000

I first struck up an online friendship with Amanda Rose Adams when she started working on getting every newborn in her state screened with pulse oximetry. I realized that she was absolutely the real deal when it comes to advocacy, speaking out, and effectively sharing her story. She started working on it and within days my head was spinning reading her updates.

She’s a true gift to the CHD community. I ~~begged~~ asked her for a review copy of her book, “Heart Warriors” so I could both read it as early as possible and review it for this blog. The book came and the next free moment I had, I cracked it open. I didn’t even get past page two before tears spilled from my eyes, and I shut the book for the day. It wasn’t a bad cry. It was a great cry actually. For two years, I’ve been in the congenital heart defect community, following families spending days, months and even years in the hospital, while watching their child go through invasive and painful surgeries. I was always compassionate, but I never came close to getting it. Until I read Amanda’s book. I felt like I was in the room with her as she sat bedside with her son, Liam. At times, I almost felt like I was invading private family moments. That’s how good Amanda wrote it, after reading her book, I felt like a family member. She spun metaphors that made me say, “Aha, now I understand, or can at least begin to comprehend,” over and over. My CHD bedside moments played out in under two hours. I don’t know what days of waiting and watching are like.

I wish that every family getting a diagnosis, dealing with CHD or helping someone with CHD could be handed a copy of this book as they leave the doctor’s office. After telling Liam’s amazing story over several chapters, the rest of Amanda’s chapters are filled with insights about her time as an advocate and mother in the CHD community. If you’ve hung around online or in support groups, you’ll be familiar with some of the things she says, but I can nearly guarantee you’ll learn a few things.

Before starting “Heart Warriors” I wondered how much I could relate, after all Liam’s story and Cora’s story don’t seem to have much in common. I found so much I did relate to though. I have so many passages of the book underlined, as if saying, “Yes, yes, yes,” me too. After some of you read the book, I’d love to compare notes about some of these sections, but don’t want to give anything away.

Sometimes, I didn’t quite agree with Amanda’s observations. These times were tiny, and probably due to our different experiences, but I could always tell her feelings or thoughts came from a well-reasoned place, and appreciated her insights.

The book was part memoir and part instructional essay in my eyes, and I really enjoyed the “Heartland” observations and recommendations Amanda made. I haven’t come across a book with this combination in the CHD world yet.

I know this will be a hard read for all of us, but I think many of you will also find it hopeful. Liam leaves me with so much hope.

Okay, enough gushing! Amanda was kind enough to donate one signed copy of “Heart Warriors” to one of my readers. You can win yours by entering in the “Rafflecaptor” below. Please read and follow all of the instructions carefully.

Buy It: Available at most major retailers including Amazon (affiliate link).

The book doesn’t come out until April 24th, but is available for pre-order now.

Win It: Complete the mandatory entry by commenting below with your heart story AND then telling me you did so on Rafflecopter (otherwise it won’t count). Get extra entries by completing the other Rafflecopter items. If you have questions/trouble entering, feel free to email me at kbrite@gmail.com.

a Rafflecopter giveaway

CHD Awareness Hits the White House: The Lihn Family Tell Their Story

Kristine — Sun, 25 Mar 2012 18:53:06 +0000

Earlier this month, a video was uploaded to YouTube that featured a congenital heart disease family. I suspect this happens a few times a week. This video was much different. This video was uploaded by the president, well, his staff, but still given how much in the limelight this video has been on the president’s campaign materials, there’s little doubt the president must be CHD Aware by this point. The story told the story of Zoe Lihn and her family, parents Stacey and Caleb and sister Emerson from Arizona, and why they support the Affordable Care Act.

It’s a political video. In the CHD world, we don’t all agree on politics. Some of us are Republicans. Others of us might be Democrats. And then some of us might lean to the Tea Party, or the Libertarians or any other party. That doesn’t matter. Why? Congenital heart disease research, awareness and all related issues are an issue that cross party lines.

I could write an entire post about this, and started to before hitting the “Backspace” key. The President of the United States and First Lady wrote about the video on their social media outlets. For years, long before I got here, we as a community have wanted a celebrity to mention our cause. Love him or not like him so much, can we get a bigger celebrity than a sitting president?

I had to find out how this all happened so I asked Stacey to answer some questions for me, and for you. I’m so glad I did because like everything involving the Lihn family, it’s super inspirational. Turns out this all started with a Facebook post!

Zoe Lihn: Born with Hypoplastic Left Heart Syndrome

Cora’s Story: How did the video come about? Did you reach out to someone in the campaign?
Stacey Lihn: Several months ago, I responded to a link posted on the President’s facebook page. The question: “how had the affordable care act affected you or your family?” I wrote a short paragraph about Zoe, her journey and added a link to our family blog (www.thelihns.blogspot.com). Months later, I received a phone call from a producer with the President’s re-election campaign asking me questions about Zoe and her lifetime caps – which were lifted shortly after her birth. After several phone calls over a week’s time, plans were made for them to fly from Chicago to Arizona to film our story.

CS: What was filming like? How long did it take?
SL: The “crew” included the producer and cameraman – two people who really took the time to get to know our family. They filmed our family on and off for 3 days – to capture our ‘real lives’ on a day-to-day basis. It truly felt like they were good friends and we were sad to see them leave. We continue to keep in touch and the producer was truly touched with our journey with CHDs and was astounded by the fact that they’re so prevalent, yet so masked and underfunded.

CS: You got emotional at one point in the video, what does the Affordable Care Act mean to your family?
SL: Simply stated, life or death. Without the Affordable Care Act, Zoe could be refused insurance for her pre-existing condition. She could be uninsurable after reaching her lifetime cap. Zoe’s defect, HLHS, is extremely costly to palliate. http://pediatrics.aappublications.org/content/128/5/e1181.abstract – a 2001 study on the cost of inpatient and surgical treatment for HLHS). Without coverage, our family would be forced to file bankruptcy, lose our home and all assets (retirement funds, vehicles, etc.) for her to go on state-assistance. It would drive our family into extreme hardship (both financially and emotionally). Not supporting the ACA contributes to the further breakdown of our country.

CS: The video was tweeted by the president and shared widely, what do you think that means for CHD Awareness?
SL: I’m extremely proud for the opportunity provided to our family to spread awareness for Congenital Heart Defects. I’ve received several emails from strangers around the country who support the ACA and ask questions about CHDs and Zoe’s journey. Many have visited our blog and learned of the statistics themselves. CHD parents across the country, whom I’ve never met, shared their story with CHDs and how important this act is to their children and grandchildren. I felt the opportunity to spread awareness could not be passed up – not to mention my firm support of the ACA and the impact I feel it will have on our children’s lives (healthy or not).

CS: Any future plans to continue advocating for the Affordable Care Act?

SL: I will always advocate for the ACA. The outcome of the Supreme Court ruling, oral arguments taking place next week, will determine just how much advocating is necessary. I’m hopeful, just as I am for Zoe’s future, that the SCOTUS (Supreme Court of the United States) will rule in favor of our children and the millions of Americans living with pre-existing conditions, women who are discriminated against on a cost-basis and begin to regulate the private insurance companies who are making outrageous windfalls with in our current healthcare environment.

CS: How is Zoe? How did she like the filming?
SL: Zoe will be 2 years old in May. The fact that we’ve kept her fairly secluded in the past to avoid illness, she very much enjoyed the guests in our home! She was unimpressed with the lights and cameras, which is good because I have a strong feeling she’s not done and will be raising awareness for many years to come.

CS: Is there anything else we should know?
SL: Next week is an extremely important time in our country’s history. The Affordable Care Act will either stay in effect or be struck down (in part or wholly) by the Supreme Court of the United States. I’ve seen the rising care in healthcare costs and not only in Zoe’s care, but in my own. It’s driving our families into significant financial stress and I’m hoping that change is coming soon. Yes, change is scary but all of us know that without risk, there is no gain – we see it every day in the eyes of our heart warriors.

…

Thank you Stacey and the Lihn family! I have a feeling that this is just the first of great things for Zoe as well. Again, no matter your political leanings, the sitting president of the United States and his campaign staff know about CHD and it’s effects all because one mother reached out. Inspiring much? Go to it!

For every 100 letters, Facebook posts and phone calls, you might only hear back one time, but that one time might be something that opens up a huge opportunity to share your story, and to advocate for congenital heart defects.

And now, without further ado, the video featuring the Lihn family:

Heart Strings

Kristine — Wed, 21 Mar 2012 22:36:04 +0000

Photo from Flickr Creative Commons by Stacie, Stacie, Stacie

A common thread weaves our lives together.

Our hearts are all strung together,

Patients, parents, and anyone that loves someone with a broken heart.

We have different political beliefs, values, backgrounds.

You can find us all over the globe, in all walks of life.

Sometimes our differences make us bicker.

Our hearts always bring us back together.

We mourn together when we lose one of our family members.

We are a heart family.

Together we collectively breath a sigh of relief after surgeries and appointments.

When we meet each other, we’re instantly bonded.

Sewn together by this affliction, one none of us ever wanted.

Since we’re here, we learn and grown.

We live a little harder, because some of us live much shorter.

Our huge hearts swell with love and kindness.

We are the heart community.

Heart strings bind us together.

…

You are free to use this anywhere you’d like, but please add “By Kristine Brite McCormick” and consider linking to this blog when you use it.

Who Qualifies As a Heart Mom?

Kristine — Sun, 04 Mar 2012 23:20:11 +0000

This might be the shortest post I’ve ever written, because it’s simple.

A heart mom is any mother with a child with a heart defect, no matter if it’s a lesion that never requires surgery and doesn’t affect day-to-day life, a mom that has spent half her child’s life in the hospital or a mom that lost her child to congenital heart disease.

We are all heart moms.

Trying to make anyone feel like less of a heart mom, or trying to compare pain is useless and futile. There are no “winners.” This isn’t the CHD-related pain Olympics.

We are heart moms.

For that matter, I’ve seen lots of people try to push people out of CHD support communities. If you have been affected by CHD at any level, you belong, that includes patients, parents, siblings, friends, aunts, uncles and anyone that needs support for CHD.

I've seen this image everywhere. No idea where it came from. I'd love to find out. If you know who created it, let me know.

Screening for Heart Defects: Moms Move Pulse Ox to National Forefront

Kristine — Wed, 22 Feb 2012 06:40:50 +0000

These days, hardly a day goes by without a news story on screening newborns for heart defects. It’s a “hot topic.” Screening for heart defects is moving congenital heart disease into becoming a household phrase–one that all parents are at least aware of. That’s a good thing.

As pulse oximetry screening becomes more popular and the real work moves behind us, more people are coming out of the wood work. Some of these people are quoted as saying as lately as a year or so ago that they didn’t support pulse oximetry screening or thought it was a waste of time.

Frankly, many of these groups are only interested in money and perhaps a bit of a limelight.

I’m not going to list all of the parent advocates that worked to make this happen. It’s been in the works for years, before I was even pregnant or knew about it. I don’t want to forget anyone.

Most of all, I don’t want to forget the babies that died because their congenital heart defect when undetected. I don’t want to forget the children that live every day with developmental delays or mental disabilities because of delayed diagnosis. I never want to forget the families that faced longer hospital stays because their child was in a more serious state because of being diagnosed later.

I do know something for certain. Without you, moms and dads, babies would not be getting screened for heart defects. Thousands of nurses and doctors deserve credit for advocating for this, and for being on the front lines ordering and conducting the screening. But, without your voices, your pleas, your willingness to share your stories (and Cora’s), this would not be happening.

Sadly, babies have been dying from undiagnosed heart defects for a long time before Cora was even a twinkle in my eye. Other babies have been the direct inspiration behind everything that’s happened. Cora has been the inspiration as well, but this one’s for the babies.

Thank you for helping move newborn heart screening forward. You’ve done an amazing job, mamas, with much more to come.

I know you won’t stop until no mother finds out about her baby’s heart defect from the coroner.

I do think it’s time we stand up and cheer for how far we’ve come. We deserve to make a victory lap, every single one of us.

The simple screening saves lives.

Top Ten Ways You Know You’re a CHD Parent Advocate

Kristine — Tue, 14 Feb 2012 21:55:52 +0000

1. CHD Awareness week makes your hardest finals week in college look like a week on the playground.

2. You find yourself saying “CHD” instead of congenital heart defect or congenital heart disease, and get irritated when people ask if CHD stands for coronary heart disease.

3. You constantly find yourself saying, “I’m no doctor, but…” and going into all you’ve learned about the heart.

4. You’ve typed the words “pulse oximetry” no less than 20 times this week.

5. You find yourself speaking publicly–even if you hoped you never would have to after your public speaking class.

6. You beg for speaking opportunities, even though speaking in front of a group makes your knees knock and your hands shake.

7. By the end of CHD awareness week you’ve cried until you had no tears, laughed until it hurt and have been running on a serious sleep deficit.

8. You’ve approached total strangers to tell them about CHD and pulse oximetry screening.

9. When you think hearts, you think about ventricles, chambers and surgeries, not pretty pink cut-outs.

10. Your Facebook wall blows up like it’s your birthday during CHD Awareness week.

Valentine’s for a Cause: On the Day for Hearts, Learn About Screening Baby Hearts

Kristine — Mon, 13 Feb 2012 19:01:32 +0000

Cora’s Story and James’s Project are extremely thrilled to announce a webinar that will take place February 14 at 3:30 p.m. Expected to last about a half hour, moms, caregivers and anyone interested in learning more about screening for heart defects, the most common birth defect, are invited to attend. The webinar is funded by Baby’s First Test, the Clearinghouse for newborn screening information. Cora’s Story and James’s Project were awarded a Challenge Award for outreach and promotion of the features of the site.

Two prizes will be awarded from Earth Mama, Angel Baby to registered attendees.

Pulse oximetry screening for congenital heart disease is a hot topic, and something all moms should be aware of. About one in 100 babies are born with a heart defect, through screening and awareness, moms can help protect their baby’s heart.

All attendees must register using this link:

https://www2.gotomeeting.com/register/651502914

For more information about pulse ox screening and CHD, visit:

http://www.babysfirsttest.org

http://www.pulseoxadvocacy.com

http://www.1in100.org