As pulse oximetry screening becomes more popular [...]]]> 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.

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, [...]]]> 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.

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 [...]]]>

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

Chances are if you or someone you know is affected by a CHD at some point you’re going to want to donate time, money or goods to an organization helping with some angle of congenital heart disease. I read a lot of updates accusing this organization or that organization of not helping.

I’m not [...]]]>

Chances are if you or someone you know is affected by a CHD at some point you’re going to want to donate time, money or goods to an organization helping with some angle of congenital heart disease. I read a lot of updates accusing this organization or that organization of not helping.

I’m not going to name names here. That’s not what this post is about. In fact, it was inspired this morning by another charity. One that has allegedly duped a lot of people, Angel Food Ministries, whose founders are facing fraud charges. I’ve heard of Angel Food a million times and know a lot of people that used them at one point or another.

I have no reason to believe, and am not accusing, any CHD-related org of doing anything fraudulent, but truth be told, nonprofits are not created equally. I think many of us, myself included, have a Utopian notion when it comes to nonprofits. We think that everyone involved only wants to help and is scrimping, saving and doing without to further the cause. It’s not the case. Nonprofit does not mean greed doesn’t exist. It does not mean that all the organizations working on a similar cause sit down and work wonderfully together. There is competition. People and organizations do elbow out other people that could perhaps do a task better and more efficiently, just to get recognition.

It’s easy to read about something like Angel Food Ministries or a status on Facebook about this charity or that charity not helping and shut down. To not support any of them and to trust none of them. I urge you not to do so. We need good, accountable non-profit organizations with good interests.

Research

Did you know you can look at an organization’s IRS tax papers on Guidestar and Charity Navigator? Before you donate and get too wrapped up, do so.

This is an extremely simple one, but Google the name of the nonprofit. Also Google the name of the nonprofit and phrases like “scam” or “drama” to see what pops up.

Is the organization acting with transparency. On the group’s web page and social media pages, do they make it clear where they get their funding and where it’s going to?

Ask Around

Don’t cause a scene, but privately ask others in the cause community, in this cause the CHD community for reviews of different nonprofits.

Email the executive director, communications person or membership director and start a dialogue. All the CHD orgs are small enough that you should get and deserve a tailored response to your inquiry. Call them up. You can tell a lot by a phone call.

If you’re going to give time, money or resources to a group, you should expect to be able to reach their leaders and to speak to them. Don’t discount your worth.

Personally, I think one of the best ways to decide to support a group is to spend time and speak with them.

Is It Legit?

Before you give money to any nonprofit, make sure that it’s legal. While most of them have good intentions, there are a lot of groups that call themselves “Foundations” or “Organizations,” but have no legal standing. It can be confusing, but if that’s the case, see if they organization holds the money or if it goes directly to somewhere else. For example, with Operation Healing Hearts, the money donated goes right to Preemptive Love. I don’t even have access to the money part of things because OHH is a grassroots organization, not a legal and registered nonprofit. Know what the group you’re donating to is doing and how they’re set up.

Don’t just take their word for it if they have the word Foundation behind the name. Cora’s Story is a registered nonprofit in Indiana, so we’re legit. We don’t fundraise much, if at all, so we didn’t see the government 501 status. But, you can still find that we’re registered by searching.

Remember, grassroots organizations are just fine, but to my knowledge, they really shouldn’t be accepting money without some sort of legal standing. Sometimes grassroots organizations can do things that the bigger organizations can’t so don’t think that they’re bad, at all.

If the organization doesn’t appear on Guidestar, most likely they’re just a state charity, which is fine, but look into it. Find out what state their registered in. I think you can find this online in most states. Cora’s Story wouldn’t appear on Guidestar because we’re registered only with the state (and have an IRS tax number, but aren’t a registered charity). For example, to search for Indiana, I’d search for “Indiana secretary of state” or something similar. I then look over the website until I find business registrations and search for Cora’s Story. Presto, here it is.

I’m using my charities as an example, not to say that they’re better than any others. In fact, we’re not even focused on the same goals as many of the other groups, and I consider us to always be a small entity. I hope that by using my groups as an example, you can learn a bit more about how to see if a group is legit.

If you really like a group, but can’t find anything online about them, call or write and ask them to direct you to the information. They should be more than happy to do so.

…

Please don’t let one bad apple ruin the entire harvest. Your help is needed.

Any other words of wisdom? How do you research a nonprofit? Please DO NOT name the names of any organizations in the comments. 

The CHD Blog Directory

Anyone that has a CHD affiliation is welcome to be added to the directory. I’m categorizing them as I think would be helpful and am open to suggestions. When [...]]]> I think we all have much to learn from each other, rather your child was just diagnosed or you’ve been living with CHD for years.

Anyone that has a CHD affiliation is welcome to be added to the directory. I’m categorizing them as I think would be helpful and am open to suggestions. When known, the defect of the blogger is listed. I’m also going to attempt to group the bloggers by defect under each category.

Just a few months after I first [...]]]> Congenital heart defects are different from many other illnesses. There aren’t just four or five varieties. There are at least 30. Too often with many of these defects, other underlying conditions are also present. For instance, about half of patients with down syndrome also have a heart defect.

Just a few months after I first connected with Kristi, another CHD mom, she learned that her son’s CHD involved more than she’d imagined. Christopher was diagnosed with Barth Syndrome. Last week, Kristi wrote to tell me that May is Barth Syndrome awareness month. Awareness week might not mean much to those of you not directly involved, but I think as parents having a knowledge of all conditions and diseases out there makes us more powerful advocates. As a human being, I think that knowing about other people’s suffering and trials makes us stronger and more compassionate.

I’m going to let Kristi tell Christopher’s story and share her words from an email to me:

Christopher is a sweet, outgoing, funny and adorable little boy who suffers from Barth syndrome.

You would not know he had BTHS just by looking at him, as he and the other boys compensate So well to have such a multitude of issues.

You would not know the endless appointments, specialists and therapies he must go through on a regular basis. You would not know that he must have injections several times a week to make his white blood cells produce sufficiently and be able to fight infections. He must take antibiotics everyday forever.

You would not know he takes 8 oral medicines a day, some of them to help his heart function properly.

He does have more difficulty in eating and because of this, Pediasure is there to help him get enough nutrition. A true Barth’s boy, he does love his butter, salt and eggs.

He has a lot of energy when you first observe him, but if you know him well, you know he does get tired more easily than others his age. Because of this, he sleeps longer than most at night.

We let Christopher guide us and he though he was slower at walking, talking and doing other normal physical things, he is very smart. Here is the story of Christopher:

Christopher Pena was born in April 2008 with non-compacted cardiomyopathy. Non-compacted cardiomyopathy is a very rare condition in which the heart muscle remains sponge-like after birth, which causes the heart to be very weak. Christopher’s cardiomyopathy affects his right and left ventricles where it is very hard for his heart to pump and function correctly. They said the only fix was a heart transplant. At that time, we opted against.

Christopher was not given very long to live. Six months at most When he was 45 days old, he was admitted into hospice care where he remained for 15 months. Christopher was released from hospice when an echo cardiogram showed that his heart function had tripled! And at 18 months, his heart function was almost normal.

In February 2010, it was discovered that Barth Syndrome is the cause of Christopher’s cardiomyopathy.

Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with Barth syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of Barth syndrome include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. 

It is very rare, so much that if people would hold hands from one end of the world, all of the way around, only one of those people would be a boy with Barth syndrome.

There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled.

….

I’m glad that Christoper was diagnosed. He’s still a heart baby as well. He was born with a heart defect.

Getting proper diagnosis of any condition is a frustrating experience, but as Christopher’s case illustrates, all too important.

I’m hoping this awareness month leads to more research for Barth Syndrome so that more little boys are diagnosed and treated properly.

If you’d like to read more about Barth Syndrome, visit this FAQ by the Barth Syndrome Foundation. 

When I get emails about babies that were undetected [...]]]> Sadly, as a heart mom active in the congenital heart defect community, hearing about another baby lost to this horrific condition is a several times a day occurrence. Every death touches me. No matter what I’m doing I always stop to learn more about the baby.

When I get emails about babies that were undetected like Cora, I’m sad that it’s happened again, especially with all the work going on now to make pulse oximetry standard. I think if the process was just moving a bit faster, and if I’d just reached out to this group or that group, perhaps every baby would already be screened with pulse oximetry. Harlow’s mom emailed me just yesterday, and I was floored, not only by how adorable Harlow is, but by what happened to her.

Harlow was a beautiful little girl born June 4, 2010.

She was born with hypoplastic left heart syndrome. For those of you not familiar with CHD, she was basically born with half of a heart. It’s a serious CHD, and without surgery in the first few days of life, most babies die.

Harlow lived with half of a heart for five weeks.

For five weeks, no one realized she had half of a heart. Every hospital has a pulse oximeter, but it wasn’t used on Harlow so we’ll never know if it would have helped diagnose Harlow earlier. But, there’s a high probability it would have, used correctly after 24 hours of life.

Harlow was diagnosed at five weeks old and almost immediately had her first surgery. She made it through that surgery.

On January 23, 2011, Harlow passed away.

We’ll never know if the outcome would have been different with early diagnosis. HLHS is complex and sadly kills many babies each year.

However, if your born with half a heart, you deserve a whole-hearted chance. What happened to Harlow should never happen again.

I’m in total awe of her mother. Harlow’s death is so fresh, and I can tell she’s dedicated to making sure it doesn’t happen again.

No mother should find out her baby has half of a heart at five weeks of life.

If you haven’t already, please read about how you can help make sure that never happens again.