I almost never turn my blog over to anyone other than Mike or Meghan, but today I am making an exception. This week is Congenital Heart Disease Awareness Week, and today I have a guest post from Kristine who shares her tragic story. It’s one I have already learned from – after Annabel was born, I requested a pulse oximetry test to check her heart. I am dedicated to helping parents have healthy pregnancies and babies, so I think it’s extremely important that every expectant parent reads this. It just might save your child’s life.
****
Leaving the hospital as a first-time mom, I felt scared, but confident.
My daughter, Cora, scored a nine on both her Apgar tests, breezed past the hearing test, wasn’t jaundiced, and I bragged to the nurses, had already had several wet and dirty diapers (always a good sign, I’m told).
After she was born, my husband stayed with her when she went to the nursery for her first checkup. He came back with a huge smile on his face. “A perfect report,” he said with triumph.
We breathed a deep, and relaxing, sigh of relief. Our baby was here, and she was healthy. And, oh yes, she already had a new nickname. Mega Cheeks. The physician’s assistant (who had quite pinchable cheeks herself) took one look at Cora and with a huge grin announced, “She’s got some MEGA cheeks.”
We called her that for the next five days. My little Mega Cheeks.
Two days later and the time to go home as a family was here. I sat with Cora in the back of our minivan (yes, we had already switched to the mom mobile in anticipation of a new family). The scene was lifted straight out of a cheesy movie. My husband drove about 10 miles under the speed limit.
The next three days brought extreme and absolute happiness as Cora and I spent our days listening to music and snuggling.
One early morning I was breastfeeding her. I looked down and she was dead. Just like that. Happily suckling one moment, a brief look up to tell my husband something, look back down, and Cora is covered in blood, limp, pale and not breathing. Dead.
Of course, I was extremely confused. All those nurses and doctors at the hospital had reassured me she was the picture of good health.
I learned from the coroner my daughter’s heart was seriously malformed. She had a congenital heart disease, or CHD.
After the battery of tests at the hospital, how could they have forgotten to check her heart? Why did we leave the hospital thinking she was a perfectly healthy baby? How could this have slipped through? Her heart. With all the tests run in the hospital, surely one of them closely examined her heart?
****
Cora and I save lives now. I learned a simple pulse oximetry (a non-invasive, simple, cheap, and quick) test performed at 24 to 48 hours successfully screens for some CHDs, especially the most lethal. But, they aren’t routinely conducted on newborns. I hope that changes soon. I also learned currently no test can catch all congenital heart diseases. I’m working frantically to find a way to change that.
I was a bit embarrassed. I had to look up congenital heart disease when I hung up the phone with the coroner. I’d never heard of it. Congenital heart disease is the most commonly occurring birth defect. The numbers vary a bit by country and organization, but according to the March of Dimes, CHD occurs in 1 in 125 babies in the United States. Others say that number is closer to 1 in 100. Not all CHDs are as severe as Cora’s. Thousands of adults and children live with a CHD every day.
Heather reached out to me shortly after Cora’s death and virtually took me under her wing to comfort me as I started on the sad path of mourning my baby. I’m in awe of her fearless work to save babies and help mommies and thank her for helping me spread Cora’s Story. I picture us hand and hand fighting to save these little lives. I think somewhere Maddie took Cora under her wing, too. Even if they only meet through my imagination, I picture them playing, laughing, and sparkling in the sunlight.
February 7 to 14 is Congenital Heart Disease Awareness Week. Please spend a few minutes learning more about CHD. I wish every day that I had taken a few moments while I was pregnant.
***
We have one video of Cora. Made as an afterthought. I was playing around with the camera and decided to video tape my husband talking to Cora in secret so I could show him later and make fun of him for being silly.
This video doesn’t seem so silly anymore. With great pride, I give you Cora Mae McCormick. I give you all of our hopes and dreams. Welcome to the world, Cora.
Kristine Brite McCormick writes about Cora (almost) daily on her blog Cora’s Story. If not on her blog, she can be found on Twitter, @kristinebrite or Cora’s Facebook Fan Page telling Cora’s Story. Follow Kristine for more information about congenital heart disease or to learn more about the acts of compassion and kindness Cora has inspired.
Also, today is the 11th, which means 11% of all sales made today at Kinga’s Kreations will be donated to Friends of Maddie! And, in honor of Cora they’ll be donating an extra 5% to FOM in memory of every day that Cora lived. Valentine’s Day gifts!
{ 102 comments… read them below or add one }
You are both so brave, Kristine and Heather. Thanks so much for sharing your stories with us.
.-= Erin W. / Beatnik Momma´s last blog ..Aware =-.
Beautiful.
You and Cora will save many lives.
.-= tiff´s last blog ..Normal is normal. =-.
You and Cora are life savers. Literally. I can only imagine your heartache. Keeping you in my thoughts and prayers. Cora’s rose blooms in Rory’s Garden xxxx
What tremendous strength and grace you possess. And what a noble, blessed task you are laboring at– to teach all of us something we’d otherwise never know, all from the lesson of your loss.
Thank you.
Such a sad story. My heart is broken for this family. Sadly a pulse ox may or may not tell you if your baby has CHD or another life threatening anomaly, and a good O2 level does not mean your baby is safe. Many of these defects are dependent on the ductus arteriosis which should close within days of birth, naturally. Once the ductus closes, the baby can die if the heart defect is ductal dependent (The reason I am SOOO against moms and baby’s going home 24 hrs or less after birth). As a NICU nurse and a parent, I wish there was a universal screening tool that insurance would approve. Sometimes a heart murmur will clue physicians into a problem and an echocardiogram will be done to find the problem But many of these defects will not cause a murmur so no echo is done. Unfortunately echocardiograms are expensive and not covered by insurance unless a problem is suspected. I wait for the day that this test will be part of the standard newborn testing.
I am curious as to why Cora was covered in blood and what the diagnosed heart defect actually was.
Prayers to you.
Hi Annie,
It’s Cora’s mom. And, you are absolutely right, a pulse ox is just the start. But, something must be done to screen more of these CHDs. Children’s National Hospital in Washington, among other groups, is currently working on making pulse ox mandatory on the federal level. Recent studies have proven the test catches CHDs. A few states already have made it mandatory. I’ve gotten several letters from moms whose child was saved by the pulse ox. Did you know nothing can currently detect CHD all the time? But, as it’s the MOST common birth defect, the time is now to do something and to raise awareness. Cora died only a few short weeks ago, so your curiosity about her defect will have to wait.
.-= Kristine´s last blog ..Congenital Heart Disease Awareness Week. Are you participating? =-.
Thanks for sharing this story. And yes, sadly I know that nothing can detect CHD all the time. I hope one day that isn’t true. It’s so hard b/c babies all present differently. We had a baby 8 years ago that went home from the normal nursery and was readmitted at 17 days old b/c it wasn’t gaining weight. This is common in CHD so an ECHO was done and the baby had transposition of the great vessels. Other than poor weight gain, he had no symptoms. On the other hand, a friend of mine had a newborn that died of the same defect in the hospital; had to be on a ventilator immediately after birth and was terribly sick at delivery. I would love to help you in your mission. Let me know what I can do! You are so brave and strong.
My son was sent home with a heart murmur that the hospital never detected — our own pediatrician did and immediately sent us to cardiologist which is where we found out that he had a hole in his heart (which did end up closing on its own after a very long year). My question to is — why isn’t this stuff detected when we are in the hospital?
Also, I’m so sorry about Cora.
I had never heard of CHD so thank you for getting the word out. If you’d ever like to do a guest post on my blog about it, please let me know.
*sniff* Awww. Beautifully told. So sad.
Thank you both for raising awareness.
God bless baby Cora! She is definitely under Maddie’s wing now. <3 Thank you for sharing with us this sad story. And thank you Kristine and Heather for teaching us how utterly important it is to educate ourselves on health issues.
Tha
Kristine,
Thank you for sharing Cora’s story. I’m so sorry for your loss. I have a 7 week old and I wish I knew about this test before we left the hospital as I would have asked for it. Is it too late now to ask her pediatrician to test for it?
.-= Dana´s last blog ..Fri, Feb 5, 2010 =-.
It’s never too late for a simple pulse ox. Also, familiarize with warning signs of a CHD. Here’s a good list: http://health.usnews.com/articles/health/heart/2006/08/31/congenital-heart-disease-symptoms.html
.-= Kristine´s last blog ..Congenital Heart Disease Awareness Week. Are you participating? =-.
Kristine,
Thank you for that info! I have to ask you…I think my daughter has had this test a few times due to other reasons. When she was admitted back to the hospital for jaundice they had that monitor attached to her toe for the entire time and it was measuring the oxygen levels which always remained between 98 and 100. My pediatricians office also did the same test when I took her in for a virus. I asked the nurse this morning if those were pulse oximetry tests and she said yes. Are they really the same tests you’re talking about? I will make sure to share this info with all my friends!
.-= Dana´s last blog ..Fri, Feb 5, 2010 =-.
Yep! They’re really truly that easy. I know it’s crazy they aren’t routinely conducted. But, we’re getting closer. There are groups like http://www.1in100.org working on the federal level to make these part of routine newborn screening. Since pulse ox doesn’t catch all of CHDs, I’ll keep working even after that happens.
.-= Kristine´s last blog ..Congenital Heart Disease Awareness Week. Are you participating? =-.
Sorry, my whole comment didn’t post before this one.
Thank you for sharing your story. I have a cousin who was born last June with hypoplastic left heart syndrome and my husbands cousin is also afflicted with the same condition so this week is very near and dear to our hearts.
God bless you and your family.
.-= Annie´s last blog ..Wordless Wednesday =-.
Am very saddened by yours and Cora’s story but Thank You deeply for sharing it with us! I would have never known otherwise. Thank You for the wanting, wishing, and desperately hoping for the safety of all newborns and for doing something about it as I am sure many known doctors have failed to disclose such important and life saving information. If only the proper persons would inform of all possibilities known that can happen to newborns and bring it upon them selves to have the heart to do the right thing as you have. You are truly a god send my dear! Thank you!
We will pray for you and family along with Heather and hers. God bless you dear!
Hand in hand, you are both doing amazing things. I’m so, so sorry for your loss.
what a loss. i admire your courage.
.-= Rebecca´s last blog ..four beautiful ones =-.
I am so very sorry for your loss, Kristine. ((hugs))
Oh my goodness. I can’t imagine…and I can’t easily find words. My deepest sympathy for your loss. I will pass this on to those I know who can benefit from the info. Thank you for helping others to avoid the tragedy that you are living through.
Kristine has become true inspiration to many. She was able to share her story, in a time of grief to make a difference. I truly believe that with women like her around we will get things accomplished.
Even though I will not be having a baby for a long time. I will always remember Cora’s story, and have my baby tested. myfutureselfthanksyou!
.-= Meghan´s last blog ..like steve young when he won super bowl 29… =-.
thank you for posting this. (((hugs))) my aunt died as an infant in 1959 due to CHD. she was three months old and lived the entirety of her life in the nicu. i am so sorry for your loss, and am inspired that you are saving lives as part of your daughter’s legacy – her spirit lives on in you and the good work you’re doing. what an amazing mother and person you are!!!
-erika
.-= erika´s last blog ..Skinny Tuesday…Errrr, Wednesday =-.
Kristine. I’m so sorry for your loss of your beautiful Cora. I ask this only because I do not know but would an anatomy scan during pregnancy show at least a sign of things needing further examination? I’m not sure how many standard pregnancies are offered one at around 20 weeks (my preg wasn’t standard from the beginning) might would also be a non invasive helpful check?
Thank you for telling your story and sharing the pulse ox knowledge. I had never heard that before.
.-= Amanda´s last blog ..Look, I just need my drugs and other random facts from my existence =-.
Bless you, Heather & Kristine, for the lives that you will be saving. I know that Maddie & Cora would be very, very, proud of what their mommies are doing……………….
Kristine, thank you for sharing Cora’s story with all of us.
Heather, thank you for letting her share it.
As someone who was born with a heart defect not detected for until a week after I was home from the hospital, I am all too aware of what could have been. Thank you.
What an incredibly sad, yet eye-opening story. I’m so sorry.
(((Hugs))) from here!
.-= jen´s last blog ..friends =-.
I linked to this post on my facebook.
.-= Lindsay´s last blog ..Ridin’ the Roller Coaster =-.
Thank you for sharing Cora’s story. I am so sorry for your loss.
i had no idea.
when i deliver this boy in june.. i am making sure he gets one of those tests!!
my heart aches for baby cora’s family!
.-= Momma Uncensored´s last blog ..kablam! =-.
Oh Cora, thank you for sharing your story. I see from your blog that it has only been a couple of months. You and Heather are both incredibly brave, amazing women to so quickly use your tragedies to educate and help others.
I work in the medical field and am certainly familiar with congenital heart failure, though I’m not in pediatrics. What I didn’t know, though, was that it wasn’t screened for and wasn’t immediately obvious upon birth. How is there not more education about this? When I get pregnant, I will certainly inquire about this test. If the test is simple and inexpensive, it is yet another failure of our health care system that it is not routinely done.
Thank you so much for sharing your story, Kristine. I can’t imagine what you are going through now. It is wonderful that you are trying to prevent this tragedy from happening to other families.
(((hugs)))
.-= Deborah´s last blog ..Amy Carson Photography =-.
Thank you for sharing your story. It is frightening how stories like Cora’s continue to happen in this day and age. My cousin had a baby boy two years ago, she had a normal delivery, he seemed perfect. They went home and all was well until she took him to his pediatrician for his 5 day well baby check (I think they had been home 3 days). While under going his normal newborn exam the doctor noticed his lips were turning blue. To make a long story short, the pediatrician rushed him to the ER where he died several hours later. He had hypoplastic left heart syndrome which was not picked up on his ultrasound nor by the hospital staff when he was born. It is heartbreaking, I think of him often and I never even met him, nor am I particularly close to my cousin (she lives 2000 miles away in CA). If his defect had been detected he could have undergone surgery that may have saved his life. I’m thankful everyday that my daughter is healthy.
Kristine,
Thank you for sharing Cora’s story. I hope her story saves many lives. I’ve been reading your blog lately after coming across it on twitter. You are a true inspiration and an amazing mom and woman. I have several friends expecting babies right now and I’ve told them all about Cora and encouraged them to ask for a pulse ox when their babies are born.
Heather,
So glad you decided to have Kristine share her story here. I hope it reaches many people and saves many lives. You both are doing amazing things and are inspiration to us all.
Love and hugs to you both.
.-= Lisa´s last blog ..Every day Should be a Birthday Day =-.
Wow. Thanks for sharing your story Kristine. Your Cora is beautiful. I am going right now to read more about CHD.
You both are such strong, inspirational women.
Jocelyn
You both are incredibly strong and awesome women. Through Maddie and now Cora, I am sure many babies will be saved. Thank you sharing your stories with us. xoxo
.-= Domestic Extraordinaire´s last blog ..My heart is overcome with bliss =-.
Thank you so much for sharing! i’m shocked that there isn’t a routine test for this. I’ll make sure my baby is tested when s/he is born in July!
Kristine, I am so sorry for your loss. Thank you for bravely sharing your story and marching on with Cora in your heart to help other children and families.
What a sweet child.
Kristine, your strength blows me away. I am so SO sorry for your loss. I’ll definitely keep your family in my thoughts and prayers. {{HUGS}}
Heather, thank you for letting Kristine share Cora’s story.
XOXO from GA to both of you!
April 9, 2009, 8:36 am
Screening Babies for Broken Hearts
NY Times
Pediatric cardiologist Darshak Sanghavi asked for a simple screening test for heart defects when his children were born. But the test isn’t widely used.
By Darshak Sanghavi, M.D.
In the middle of one night in August, a seemingly healthy one-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and—even more worrisome—no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.
Ryan’s story isn’t that unusual, and I’ve seen half-a-dozen similar children recently. A few months ago, the U.S. Centers for Disease Control reported that the infant mortality rate is the United States was 6.71 per 1,000 live births, which was widely reported as being higher than other developed countries. Birth defects, especially involving the heart, are an important cause of these deaths. In October researchers studying infant deaths over the past 16 years in California reported that hundreds of American infants like my patient probably die each year due to missed—but treatable—congenital heart defects.
How can we identify these normal-appearing newborns before they leave the hospital, become critically ill like my patient, and perhaps die?
Traditionally, prospective mothers have prenatal sonograms to look for birth defects. But the quality of these scans varies widely, depending on the skill of the technician and the supervising doctor. In addition, current guidelines supported by the American College of Obstetrics and Gynecology mandate only a limited “four-chamber view” of the heart. As a result, a 1998 study from Southwestern Medical School in Texas reported that only one-quarter of major heart defects are identified prenatally.
Unfortunately, when heart defects are missed by prenatal ultrasounds, pediatricians also have a hard time telling if critical cardiac problems are present. Normally, doctors examining newborns suspect heart defects if they hear a loud rushing noise (a “murmur”) with a stethoscope, notice the child has a bluish color, or lacks a pulse in the lower extremities. But in 1999, British researchers found that half of serious heart defects were missed by routine exams after birth. If sent home, these newborns become seriously ill.
Folic acid can prevent up to fifty percent of many heart defects, but only if taken for about 2 months prior to conception. Because most pregnancies are unplanned, the Centers for Disease Control recommend that all menstruating women should take a daily multivitamin.
What’s needed is a large-scale formal screening program, similar to mammography or colonoscopy to identify at-risk individuals. We already do this to identify newborns with certain hidden but deadly conditions. For example, most state health departments currently analyze a few blood drops taken from a baby’s foot, and check for certain genetic problems like phenylketonuria (PKU) and galactosemia, which are treated with special diets to prevent developmental problems.
Recently, researchers have identified a promising new method, called pulse oximetry, to screen all babies for heart defects. Taped briefly to a newborn’s foot, a small sensor painlessly beams red light through the foot and measures how much oxygen is in the blood. It takes about a minute. (Picture E.T. the extra-terrestrial’s finger lighting up, and you get the idea.) If the screening test is abnormal, doctors perform a confirmatory ultrasound of the heart. Last year, Norwegian doctors published one of the largest clinical trials of this strategy, and checked half of all babies born in the country.
The results were impressive. Within a few hours of birth, pulse oximetry detected three-quarters of critical heart defects that had been previously missed. For every 2,000 newborns screened with the toe light, roughly one with a critical heart defect might have been prevented from going home. The cost-benefit ratio compares favorably to current practices of newborn screening for PKU and hypothyroidism. In January, Swedish doctors published an even more methodical study of almost 40,000 newborns, and showed that oximetry entirely eliminated death from missed critical cardiac defects.
Of course, as with any screening, the technique may miss some defects and also involves some unnecessary, though benign, testing of normal children. But these false positive rates were low (only about 1 in 1000 in the Swedish study), and triggered only about two instances of extra, non-invasive testing for every serious heart defect that was picked up. Many parents and doctors caring for children with critical heart defects subscribe to some variant of the “one-percent doctrine.” If there is even a small chance of catastrophe—like the sudden death of a newborn—they feel justified to push for preemptive action, especially when it’s a harmless and inexpensive screening test.
While the screening test is not done routinely in the United States, some hospitals have adopted it, mostly in Texas and Florida, where some small trials have been conducted. But parents can ask doctors to screen their babies for heart defects using pulse oximetry. It’s essentially free since it needs no specialized equipment other than the oximeter, which is present in every hospital already. A specialized doctor isn’t needed; the test is quite simple, and a nurse can do it if the pediatrician orders it anytime after birth, but before discharge from the hospital. Hopefully they won’t mind doing it. Personally, I do think parents should request it. I did for my kids.
Fortunately, Ryan, the baby I was urgently called to treat, had his heart surgery last summer and is doing well now. I see him every few months in clinic.
Dr. Darshak Sanghavi is the chief of pediatric cardiology and assistant professor of pediatrics at the University of Massachusetts Medical School. He is the author of “A Map of the Child: A Pediatrician’s Tour of the Body,” and his Web site is http://www.darshaksanghavi.com.
I won’t be having a child for a long time, but I’ll remember Cora’s story and make sure to test. Thank you for sharing her with us.
THANK YOU so much Kristine for sharing your story with the world. I can’t even imagine going thru such a tragedy, but i’m thankful for you turning it around and helping save other lives. I have several friends who are pregnant right now and I’m going to share Cora’s story with them. Her memory will live on thru the babies who she saves.
.-= Jess´s last blog ..#41/#365 =-.
You guys are heroes for taking your heartbreaking personal tragedies and sharing them with the world – educating parents and helping future babies live strong, healthy lives – you are amazing!
xo from CT,
Amanda
.-= amanda´s last blog ..weekend. update. =-.
It is incredibly sad that something like this has to happen for people to know about it. I would have never known without this story! Kristine and her darling Cora are surely saving lives.
I wonder why the hospitals don’t automatically run this test?? Being 17 weeks pregnant, I am keeping this link and will be sure to ask the hospital to run this test when we deliver.
.-= Kt´s last blog ..Still in Disbelief =-.
Heather and Kristine- thank you for sharing your stories with us. I have no doubt that the work you have done will certainly help save other babies lives. Keep up the amazing work, I hope that one day, your efforts will no longer be needed.
.-= MstoMrs´s last blog ..I think I’m losing it.. =-.
Thank you for sharing this. I had no idea, but I will remember Cora and if we are ever blessed with a baby again, will ask for this test. She was beautiful, I’m thinking of you and surely Cora and Maddie are giggling together in Heaven.
Thank you for sharing your story, Kristine. You have my sympathy for your terrible loss.
I’m 19 weeks along, and am going to make sure this test gets requested and done whenever my little girl shows up. Thank you.
.-= J´s last blog ..Seriously (not) in-depth Sunday morning update =-.
I am so sorry for your loss. What a terrible and unexpected thing to happen. Something I realize is that as first time parents at the hospital with our babies we are clueless. Absolutely clueless. We reply and depend on the medical staff to guide us and we assume that they are doing everything they can to take care of our baby. I don’t think most people would have known about that test or to request that it be given. I know I wouldn’t have.
Thank you both for making us aware!
.-= Andrea´s last blog ..Time to get Serious =-.
I wish I knew why so many moms and dads have to bury babies…what a horrific story. You are brave and so strong, Kristine (like Heather) to share Cora’s story in order to save lives.
I am a parent of a 6 year old boy who has CHD. Never heard of it before but at 2 months old he had open heart surgery. He is my angel. My survivor. Jarrett has the strength of 10,000 men. Thank you for making and trying to get more testing before they let us take our babies home.
I have always felt that they check everything else but the heart. Good work.
I am sorry for your loss I can’t imagine. I didn’t lose my little guy and I am thankful for him everyday. Here is a website too that I have found and support.
http://www.littlehearts.org/
What a sad story. I hope that someday no parent has to go through what you, Mike, Kristine and her husband have.
.-= Lisa_in_WI´s last blog ..50 Book Challenge, 5/50: The Nanny Diaries =-.
Sounds a little similar to what happened to a family in my neighborhood. They took home an ohterwise healthy baby boy, and he was dead less than a week later. I believe he turned blue, was rushed to the hospital, found he had heart defects, had surgery, but he died. How could these defects not be found on u/s???
My own son, while this is not a major heart defect, though quite rare, had a double aortic arch/vascular ring defect that was not diagnosed till he was one. Despite spending two months in the NICU for prematurity, and all the heart scans they do in the beginning days for PDA. Fortunatley, ours was a one time easy fix. But is considered a Congenital Heart Defect.
Your baby Cora is beautiful. What a terrible terrible thing to happen.
Cindy
So much love to you both. xo.
.-= Mrs. Cline´s last blog ..A Week of Giveaways for CHD, Day 2! =-.
Thank you Heather for using your blog to spread this very important information. My heart breaks that both of you have had to walk this unimaginable journey. I will direct as many parents as I know to your blog today. Blessings to you both.
Love,
Tricia
.-= Tricia (irishsamom)´s last blog ..2nd Annual Great Bloggy Holiday Card Exchange =-.
Kristine,
I am so very sorry for your loss. I live near Grand Rapids, Michigan and we have a very large hospital here, a huge new Children’s Hospital (Helen DeVos Children’s) is being built and now they’re trying to get heart transplants approved to be done here – Spectrum Health Hospitals, Inc. What I am not sure of about this huge hospital system is if they do the pulse oximetry test on newborns or not. Their NICU is 150 beds, so I am hoping they do this test.
I pray for peace over your family, and I pray that God will bring you and your husband happiness on this earth once again. I know that Cora and Maddie are together in Heaven and they are whole, healthy and happy.
Thank you for sharing Cora with us.
.-= Aunt Becky´s last blog ..Warm, Like The Evening Sun =-.
The thought of Cora and Maddie playing together brings happy tears to my eyes. Cora’s story is a sweet one and I”m glad it’s being told.
.-= Becky @TheRealBecks´s last blog ..A Happy Update =-.
A pulse ox might not detect everything but in our case it probably saved my son’s life. He had an issue with his brain telling his body NOT to periodic breath. While most babies periodic breath 3% of the time, our Sam did 12% of the time. They sent him home and only MY NAGGING fear that something wasn’t RIGHT saved him. As soon as that pulse ox machine went on his toe we KNEW we had a problem. Had I stayed home and done nothing like the doctors told me to do he probably would have died in his sleep. I was shocked when I asked the NICU nurse what his stats were at birth and they told me its not routine to check! It’s cheap and painless and in our case would have insured our child’s brain wasn’t affected by lack of oxygen.
I was lucky that I was a big enough paranoid freak to FORCE the doctors to check him. Sam is delayed but he is with me. I shudder to think at the babies who aren’t so lucky. This SHOULD be standard. When I read Kristine’s story I was so angry and moved. Moved to DO something. This must happen so that another mother isn’t taken off guard like this. Knowledge is power so why not use EVERY AVAILABLE RESOURCE!
.-= Jodi´s last blog ..I have no idea what day it is….that’s the kinda week I have had… =-.
Kristine,
I am so sorry for your loss. You will be in my thoughts and prayers and I am glad you are helping other people. Who knows how many babies’ lives will be saved?
I am so sorry to hear that story. My daughter was diagnosed with a congenital heart defect shortly after birth. She slowly went down hill and by the time she was three months I was told she needed a heart transplant and that she could suddenly die at anytime. I was frozen with fear and grief for 18 days. My story has a happy ending where the doctors discovered an enormous hole in her heart that they had missed with three echocardiograms. They were able to fix the hole with open heart surgery and she is now my little miracle. I can not imagine what you guys go through every day. I only teetered on the edge thinking my child would die and was pulled out of the nightmare. That experience changed our lives. I sometime feel guilty because I got out and so many others live that nighmare forever. Please feel the love I send. I wish you peace in your lives and I admire your courage to help others. Thank you for sharing your story.
I’m having my first child in June and it never would have occurred to me to ask them to check my son’s heart. Thank you so much for this eye-opening post.
I am so sorry for Kristine’s loss, but I am grateful for the message that she is spreading on behalf of her lovely daughter Cora.
.-= Jess´s last blog ..The Great Weight Gain of 2010 =-.
I am so terribly sorry for you loss. It’s so heartbreaking. Thank you for sharing Cora’s story.
.-= Rumour Miller´s last blog ..Fetal Assessment =-.
Cora was so beautiful. I am so sorry for your loss and want to thank you for sharing your story in an effort to save other babies.
.-= Kristin´s last blog ..My Palm Autopilot =-.
Thank you for this! I really appreciate the information and have passed it on to my sister who is due on March 1st. Her father-in-law has had a heart transplant due to a genetic condition and this will really help her to focus her requests for testing and making sure her baby is healthy.
Cora is already making a difference!
Thanks for sharing your story. Sorry for your loss. My niece was born with CHD in 1982 and she passed away in 1983 after open heart surgery to repair 2 of her valves.
I am so sorry for your loss. This information will save so many lives. I ordered a bracelet today so both you and Heather will get a donations for your causes. I will keep you in my prayers.
Your daughter Cora is beautiful. Heading over to visit your blog. Take care & God Bless.
.-= Debby´s last blog ..RANDOM DOZEN =-.
It saddens me to no end to hear of an infant leaving the world. I commend you for your diligence in creating awareness about CHD. I work, too, to create awareness about SIDS, after losing an infant son in 1987. My heart goes out to you. Maybe through our efforts, our babies lives will serve to save other parents and their babies from experiencing similar tragedies.
.-= Patti McKenna´s last blog ..A Valentine’s Letter from Cupid to my Husband =-.
Hello Kristine,
Thank you for sharing you story and your beautiful daughter. Cora was perfect and those cheeks!!!! You were right!!!
Heart disease is something close to my heart as my 10 month old God daughter SUDDENLY passed away from it after her heart surgery was canceled 3 times due to a lack of beds in the PICU!!! If only they got her in when they were first suppose to…. It is something we struggle with on a daily basis. So, I understand where you are coming from and I am so very sorry for your incredible loss!!
I’m glad Heather wrapped her “Earth Angel Wings” around you. She is such a strong, inspirational person. If anyone can help you…it’s Heather.
Please know you, Cora and your family are in my thoughts and prayers. Thank you for taking on this cause! I’m sure both you and Cora are saving little lives EVERYWHERE!
Take Care.
Jenn
I’m so sorry Jenn. Here’s my email, kbrite(at)gmail(dot)com. I’ve connected with amazing people that understand CHD, others in our sad club. If you need or want that kind of support let me know. It’s just not fair, is it?
.-= Kristine´s last blog ..Congenital Heart Disease Awareness Week. Are you participating? =-.
NO Kristine,
It is DEFINITELY NOT fair!!! I miss our girl very day. Her little smile, laugh….she was becoming more and more….perfect. I thank you for your efforts. Hopefully, because of your loving heart & determination, no other mother (or God mother) or family will ever have to say good bye to the babies they love with their whole being. Thank you for your website/support group. I will (if you don’t mind) pass this info on to my girlfriend in case she wants to join to receive and offer support to others who have been through this awful circumstance. Thank you!
God Bless you and thank you Krtstine….thank you very much!
I too am saddened everytime I hear of a darling child taken too early. I thank god every day for my daughter. I think that what both of you are doing to help awareness is so amazing. Ido and will continue to support you!
.-= Danielle´s last blog ..Opening my eyes for a change. =-.
Thank you for this story. I will be sure to ask for a pulse oximeter test when my baby is born in July and I will think of Cora.
This was a heartbreaking story, but being 8 months pregnant, this was very disturbing to read first thing in the morning. I am feeling very torn – it makes sense to spread the message, but fear sometimes makes people want to shut down (on the receiving end).
Thank you for sharing your story! My daughter also has severe un-repaired CHD that went undiagnosed until she was 4 years old! Yes, 4 years old!! And she was in the NICU for 7 days at birth. I do all I can to help raise awareness, and have signed many petitions to make pulse oximetry a madatory newborn screening.
My daughter is now 6, but we almost lost her at age 4 right before her diagnosis. I can not imagine the pain you must feel, but I commend you with sharing your story.
Many thanks again! Another Heart Mom, Liza
Heather & Kristine,
Thank you both so much for sharing and shedding light on CHD. My daughter was born with multiple cardiac defects and also passed away after a long hard fought battle. Thinking of you both and both of your angels!
Brigid
Dear Heather and Kristine,
Thanks so much for shining a light on CHDs. Kristine, I am so, so sorry for the loss of your beautiful girl. I too have a daughter with a severe CHD (actually seven CHDs if you count them all), but we were lucky that her problem was detected during my 20 week ultrasound. My daughter Renee was born with Hypoplastic Left Heart Syndrome (meaning the left side of her heart wasn’t working at all), she has undergone three open heart surgeries before the age of 3, plus other medical procedures. Luckily and with daily medication, she is now a “healthy” 7 year old who is doing well. We pray that this continues, living every day as fully as we can because the future is so uncertain.
The kicker for me is that after her diagnosis both my husband and I were checked for heart murmurs, but never my then 3-year old, even after I requested it repeatedly. Our wonderful cardiologist tested her without charging for it, because he knew we would never be covered.
There are some wonderful support organizations for parents of children with CHD, like the Congenital Heart Information Network, or Little Hearts.
Kristine and Heather, I truly appreciate all the work you are doing for helping parents understand the need for screening.
Sincerely, Kirsten
My goodness. I’m so so sorry for your loss, but thank you for this wonderful post. (This is going to sound lame, and it is, but I’m going to say it anyway. There was a Grey’s Anatomy episode (i know you’re all cringing) a few seasons back that dealt with this issue. And I’ve never forgotten it. I always wondered how something like that could have been prevented in a real life scenario.) I have two young girls, one of whom is very familiar with the pulse ox machine. Very.
Thank you for sharing this. We will now make sure that all of our future babies have this test before leaving the hospital. I would have NEVER even thought to ask. You and yours will be in our prayers.
Much love.
Kristine & Heather- Two of the most most inspiring mothers I have yet to meet in real life. You both have taught me so much and your strength amazes me daily.
Kristine- Your mention of Maddie taking Cora under her wings just as Heather did for you made me lose it. What a precious and poignant picture.
(((HUGS))) from Florida
Kristine, I am so, so sorry for the loss of your sweet Cora. Thank you for sharing her story. I know you and Cora will be saving lives.
xoxo
.-= Alison´s last blog ..What is a Twin Good For, Anyway? =-.
I was wanting to nominate Friends of Maddie to this thing that I saw in Parent’s magazine but am not smart enough to figure out how to do the nomination……….parents.com/helpinghands
.-= Rebecca´s last blog ..Million Dollar Idea =-.
What a beautiful little girl and such a tragic story. I am hoping to start a family this year, and I have been trying to educate myself as much as possible. Thank you for sharing your story. I now know something I will definitely have my future child tested for, all because of baby Cora.
Love & prayers,
Lisa
You are both brave and couragous women! God Bless.
Kristine your beautiful Cora has made such an impact on this world thanks to all you do.
Thank you for sharing your story and your Cora.
Also, I am 100% positive that Maddie has taken Cora under her wing too
God Bless You
Through such sadness and tragedy comes the hope that more babies can be saved because of your efforts. I applaud you!
.-= Teri´s last blog ..It may be cold where you are, but… =-.
I am so sorry that you had to go through this but thank you for sharing your story and i hope that you are most successful in your mission to save babies lives!
all my best!
.-= melissa´s last blog ..awesomeness lol =-.
Thank you for sharing Cora’s story. I am a high school English teacher and two years ago one of my students inexplicably collapsed and died one Friday night. An autopsy revealed that he had an undiagnosed heart defect. Apparently he had the defect since birth, but it went undetected for 15 years. Two months after his death my daughter was born. She was a hefty 9.6 pounds and received excellent scores on her Apgar tests. No one had an reason to suspect that anything was wrong with her until her pediatrician discovered a heart murmur that turned out to be a hole in her heart. Maeve’s hole closed after six months, but I feel like after that scare and the ordeal with my student I will always be over-the-top protective of her. Thank you for raising awareness about CHD.
Rest in peace sweet baby Cora…
This made me cry. Thank you Heather, because from knowing you and your friends, I am learning things that I never knew. When my time comes to have children, I will be filled with a wealth of knowledge. I can also inform my friends who are having children, and I can get the word out.
Cora was a beautiful girl. She and Maddie are playmates in Heaven.
My best friend’s baby was born with CHD. She’d had all the ultrasounds, all the normal stuff. They caught none of it. E. was born healthy and happy. Sometime in the wee hours of that first night a nurse came to take the baby’s vitals and pulled her little bassinet out into the light so as not to disturb mom too much. That’s when she noticed the baby was turning blue.
E is a 3rd grader now. She had a long road as a newborn and still has more open heart surgery before her… but if that nurse had waited on those vitals much longer, E would have slipped away on that first night when her PDA closed depriving her of oxygen.
My own eldest was born with a minor CHD (a VSD caught by a routine peds exam in the hospital). He quickly grew out of his… but both of these experiences taught me not to celebrate the ten fingers and ten toes … but the big stuff like 4 functioning heart chambers.
Sweet, sweet Cora. Thank you for sharing her with us.
I cannot publicly or privately thank Heather enough for sharing Cora’s Story. It is sad, but it is also hopeful. When detected early, many CHDs can be fixed and outcomes are good. Thank you for all the discussion.
If you’re pregnant, I don’t want you to leave Cora’s Story full of fear. Awareness and education are powerful. Cora saves lives now.
So heartbreaking. I know Cora’s life will not be in vain. Her story WILL save other children. I am so incredibly sorry for your loss. Praying for strength for you and your family.
Hi Kristine and Heather- It’s 2:30 AM, but I can’t go to bed without responding back to tell you how much your stories have touched me.
I work on the web team at Children’s National Medical Center in DC and your post and all these responses about Pulse Ox has really helped me understand the impact of the work we are doing.
There is a HUGE difference between reading statistics, and reading personal stories about tragedies that could have potentially been avoided.
Words can hardly express how I feel after reading your posts. I have been blessed with two boys-4y and 15 months, and am 7.5 months pregnant, with a little girl. I worry and pray every day that she makes it to term and is born healthy. The video of Cora reminded me so much of the first few days of each of my sons’ lives and the happiness and hope that you feel as a parent. It’s so sad that you didn’t have more time with her. I am so sorry for your loss. I have had 3 miscarriages, the last one being an ectopic pregnancy from which I almost died. Losing a child is one of the most painful experiences anyone should ever have to endure.
You are both such an inspiration to me, and will think about you often when I am working on this project.
This week, I was feeling so frustrated trying to work from home -making a bazillion weather updates on the website- and take care of the kids while my husband was trying to do the same AND clear out the snow from the 40 inches we’ve received in the past few days. Its so easy to get caught up in the stresses of life and forget to LIVE it.
Truly, THANK YOU for not only giving me renewed meaning for my work, but for also reminding me to cherish each moment of every day with my kids and family.
Kathey
Kathy- Your work matters much. I’m aware of your site and point mothers there all the time. It gives me strength to know a national hospital like yours backs standard pulse ox testing. I’d love to talk to someone from the program more if you can connect me. My email is kbrite@gmail.com. I’m so sorry to read of your loses.
.-= Kristine´s last blog ..Congenital Heart Disease Awareness Week. Are you participating? =-.
Kristine, you and Heather both amaze me. At a time when it would be completely understandable for you to just curl up in a ball and close yourselves off from the entire world, instead you are out saving lives and making a huge difference. I can think of no better way to honor your gorgeous daughters. Your strength and grace is simply extraordinary.
((Hugs and prayers for all of you))
It’s a shame, the things we learn at moments of anguish. Thank you for the information. I’m heading over to Kristine’s blog right now…
.-= Pamela @ 2 Much Testosterone´s last blog ..I’m Featured on Aiming Low’s Three Day Weekend! =-.
Thank you both for sharing this… Because of you a future group of mommies (like myself) will be prepared and educated.
And the image of Maddie and Cora together had me crying quietly in my cubicle.
Prayers and hugs to you both.
I am a nursing student hoping to work as a L&D nurse, and I will remember always your story. I promise to make sure it is known how important the Pulse Ox test is where I work and among all my fellow nursing students.
Your stories are both so heartbreaking yet it’s so inspiring the work you both are doing.
THANK YOU for this information. I am due in 3months and will request this test.
Wow. Just wow. Thank you Cora for sharing your story here. I’m so so sorry for your loss. I sadly had NO idea about CHD and even though my daughter is now nearly 4 yrs old, you can bet I’ll be asking her pediatrician to check her out (especially since I had a heart murmur when I was a baby, that I didn’t find out about until I was well into my 30′s and found some of my adoption papers).
Much love to you (& Heather) for sharing such valuable information.
.-= Cheryl´s last blog ..Captcha This =-.
I am crying… I gasped audibly when I read your words, about Cora dying so suddenly. It just boggles my mind that any baby should die that way – no child should ever die – but to die from something that could have been detected? Is just terribly sad and unjust. You are SO strong and you are making your baby proud by being so strong and getting the word out there about congenital heart disease. Thank you!
I’m full of tears streaming down my face reading your story. I am heartbroken for your loss. Thank you for sharing Cora’s story with us and all that you and Heather are doing to educate Moms so we can all save more lives together. You are both such amazing women – doing all this during your own personal tragedy. Thank you. Colleen
.-= ClassyMommy´s last blog ..Win Khakis from Dockers =-.
{ 1 trackback }