Showing posts with label CHD. Show all posts
Showing posts with label CHD. Show all posts

Thursday, November 6

I Am An Empath



I am an Empath.

I feel...deeply. Not just my own feelings. But those of others. I pick up on the feelings of those around me: people I know, people I don't know--even neighborhoods, or houses, or stores. I don't like shopping in many thrift stores as I smell and feel death and despair all around me. I love touring houses for sale, but can often pick up on whether the family was mostly happy, sad, or violent.

I am an empath. I am not a psychic. I just feel deeply. I can often pick up on the feel of neighborhoods. I can tell if I am walking (literally) into evil (a story for another time--a story of a Halloween past).

I am an empath. I pick up on the feelings of others--in stores, in the work place, in strangers, and especially in friends and family. I feel their joy and their grief as though it were my own. I will feel their injustices as my own. God forbid someone hurt them.

Being an empath is the ability to sense the feelings and emotions of others, without their telling us, verbally, what they are thinking and feeling. Often, someone who is an empath needs to learn basic shielding techniques - otherwise, they can find themselves feeling drained and exhausted after absorbing the energies of others.***

Funny thing is, or perhaps it's because of all this, I have a hard time sorting out my own feelings at times. My mom will point out that I seem pensive or snappy or off--and then I will sit and sort through things and suddenly it will all pour out with the most minor thing coming out first and the heaviest thing last. And it will usually be a build up of things--and they won't just be about me. It will include things about friends who are dealing with things too.


Want a for instance? After being crabby with my mom last night (and telling her I wasn't--LOL), I all of sudden paused the TV show we had been watching and in a flood of words (and tears) told her for an hour all that had been upsetting me:

...my medicare insurance sent me 5 huge books about upcoming changes in the insurance plan I currently carry. Um....I have suffered bain dramage...I mean brain damage...and that kind of paperwork doesn't just overwhelm me--it immobilizes me! And then I have guilt about not reading the pile of crap and not knowing what's happening and feeling immobilized, which makes it worse. And I have to read it and decide if I still want it. And if I don't, I have to research and find a different one. But instead, I'm just going to keep it...cuz, really, seriously, no one can expect me to do all that! Can they?

Ok, yeah, that was fairly minor. All things considered. But those things have been bogging me down since October.

...October. October. October 6th. Huge, deep, shuddering sigh. October 6th was the 4th angelversary of my friend Jill's baby son Joshua. Joshua was diagnosed, in utero with a Congenital Heart Defect (CHD) that doctors didn't know if he would survive within the womb, but he did; and they weren't sure he would survive the surgeries needed to fix the heart once he was born. He surprised them by surviving the 1st. But while he was a brave as a lion, his heart wasn't strong enough and he passed away in his mother's arms while his daddy drove desperately to the hospital. My heart absolutely breaks for Jill and her family (not just on October 6th but year-round) as they continue to learn to walk through this life with one of their darling family members not here with them. When Jill grieves, I grieve with her. Deeply. When she talks of her eldest son's grief for his missing baby brother, my heart breaks. Yes, they are learning this new normal, but it is hard. Jill is an inspiration to me, but the things she has gone through, at the hands of cruel 3rd parties, no grieving mother should go through! And yet she has found hope and comfort in the arms of Christ Jesus. She's my hero. She's my friend. And I love her. (She also is the maker of Branwen, the special doll that Teagan & I play with, who is very special to us. She is also the founder of Joshie Dolls: she makes dolls for CHD children/families' with the exact scars that the children have. Absolutely incredible. And very healing for them!)

Isn't Joshie beautiful? Doesn't he have the deepest eyes?

 

 



And then October rolls, inexorably on into November. November.

The funny thing is autumn is my favorite season. The colors change--yellows, reds, oranges. The rain comes. The grass gets greener than you can believe.

I love November for all that.





But at the same time, I hate November.

...November...November...November 11, 2007 was the birth of the Madeline Spohr. I started reading her mama, Heather Spohr's blog, The Spohrs Are Multiplying back 2008, I think...after I had had to stop working due to illness and could just sit and read this fun blog. I freaking fell in love with Madeline (and the Spohr family--doggie Rigby included)! This spunky lil baby just captured my heart! She had been a premie who kicked statistics in the butt and went on to pretty much thrive. Notice I said pretty much. Because she was a miraculous premie, Maddie always had lung issues. Getting a cold was no simple thing with her--it was something to be avoided at all costs. Pneumonia could be deadly. Frankly, a cold could be deadly. And in April of 2009, it was. On April 7th, that incredible ray of sunshine was gone. It was such a shock. Of course to her parents, but also to the readers of Heather's blog--I mean WTH?!? Babies are not supposed to die!!!! (Though, of course, I knew they did as a former colleague of mine experienced the horror of child-loss through still birth just months before, in December 2008, actually, when my sister was heavily pregnant, scaring me to no end. The service was so sad, so horrible seeing that little tiny casket, seeing that empty armed mama and then Aaron not knowing what to do--there was his grief to deal with and hers--he wanted to comfort and protect her while not knowing what to do with his own grief.)

I've watched the Spohrs go through this process of grief for 5 years now, little knowing that they, their blog about their lives, would be paving the way for myself just a few months later. Through them I met Kristine (see below), and through Kristine, I met Jill. Six degrees of separation. The worst kind of separation. But I've watched them form a "new new" and seen them be blessed with 2 more incredible children...and loss another child to miscarriage. Heather also lost her best friend to brain cancer. Her best friend who had stood by their side through everything and had been their lifeline lost her own. I grieved so heavily, yes for Jackie as that time came, but mostly for Heather and also for Mike (Heather's husband) as he was once more grieving his own loss Jackie was also his friend, after all) while trying to comfort his wife during this traumatic time. I am an empath. I feel these things deeply because, as odd as it may sound, I've bonded with Heather, someone I've never met in person and I feel for her deeply. And, no, I'm not a stalker. November 11th, Maddie would have been 7. Jackie would have been 36 on the 13th. Days that were supposed to be happy are now bittersweet because the person is gone. Permanently. Maddie only had one birthday ever. One big party and one private little celebration with her mom & dad. They had cream puffs. We always have cream puffs November 11th in honor of Madeline.
Again...gorgeous eyes!! And that smile! Sunshine!



...November...November...November...Five years ago, November was supposed to have been such a great and exciting month for our family. Earlier in the year my sister & brother-in-law had just given birth to her 1st born and that November my brother and his wife were expecting their first born. The cousins would have been a fun 9 months apart. Instead...instead....without ever taking a breath outside of the womb, on November 12th, 2 days before his due date, my nephew Demetri passed away in utero. He was born the following day via (induced) natural birth. He was born the day after he died. 

Our Little Angel

Our family's world was turned upside down. The grief was unbearable. No one was prepared for this disaster. No one could have foreseen. No one should have. But life went on. The "new new" as we learned it was called. We are still learning about it. There have been joys along the way--we were all blessed a couple years later with the birth of Demetri's little brother Dante. He is a joy and a blessing and a sweetheart! And he and his older cousin Teagan are thick as thieves! We all love seeing them together.


But grief is a process--a long one. But you start traditions that help get you through. My mom & I planted rose bushes for each of the grandchildren/nieces&nephews in the yard of the house we purchased together, but it started with planting a special rose bush for Demetri that we planted while at our rental house. It is a climbing rose bush, its branches reaching towards the heavens. It's a Josheph's  Coat--the roses have many different colors--yellows, oranges, reds, and pinks of all different shades. I save and dry rose petals every summer. Each year on the 13th, we to a park near to where we live. It's beautiful there. It's a park--not a playground (though there is one of those there too). A river runs through it. There are trees, birds, plants, ducks, nature, all around. There's trails for walking, biking, etc. And there is an arched bridge over the river. Each year we go there together and quietly meditate and silently talk to Demetri and scatter rose petals into the river. I take pictures. Of us. Of the river. Of the petals. Of the changing trees. And it brings peace. The empath in me needs that.

 


Last year I was sick. Too sick to go. I seriously couldn't move out of bed, due to pain, for over a week. I've felt guilty for a whole year about that. Which is really stupid. Because Demetri wouldn't have cared. Had he lived and had it been his birthday party that I had had to miss, he would have been sad, I would have been sad, but neither one of us would have felt guilty for a whole effing year, for god's sake!!! If the party had been at our house, he would have come upstairs for a cuddle & a kiss & that would have been just fine. Why do I carry stupid, useless guilt like that around with me? Why? Don't know. But I did.

And besides our own grief over losing Demetri,  there was also the grief of watching his parents grieve--or try to grieve...to try to continue to breathe...continue to live...to make the motions...to eventually find a new normal for themselves. Losing a child is the hardest thing a couple can go through. In fact, most couples who lose a child eventually divorce. It may not be immediately. It may be a few years down the line. Losing a child changes a person, sometimes so radically that a marriage cannot survive. If there were fissures in a marriage prior to child-loss, the earthquake of child-loss can cause the structure of marriage to topple. Not always, but often. Heather Spohr wrote about child-loss and marriage:

"The death of a child completely shatters you. You’re the same people, but at the same time, you’re really not. Everyone changes throughout the course of a marriage but it’s rarely so sudden and complete. So you have to get to know each other again under one of the most harrowing circumstances imaginable.
No two people grieve the same, even when you’re grieving the same loss. One partner might be very vocal about how they’re feeling, while the other is quiet. One might express grief in “traditional” ways (crying, etc) while the other does things their partner finds odd. You’re also rarely grieving on the same “cycles,” so to speak. Sometimes you resent your partner for bringing you down when you’re having a good day. Sometimes, you feel guilty for bringing your partner down.
There are times in grieving where you want to be – need to be – selfish. You don’t want to consider somebody else’s feelings, only your own. You want to be taken care of, and you want to believe what you’re going through is the worst and no one can possibly understand how much you hurt. But you do have someone who understands, and it’s both a blessing and a curse. A blessing to not have to walk the path alone. A curse because some days it’s all you can do to help yourself survive, let alone someone else. Shutting down and shutting out becomes a defense mechanism.
You’re also forced to address difficult situations and emotions that you might otherwise be able to ignore. It would be easy to ignore the complicated things if you were grieving solo – you can just say that no one understands, and leave it at that. But with a partner in grief, you’re really forced to examine painful concepts and memories if you ever want to possibly rebuild your life. Sometimes you have to do that at someone else’s pace, and it’s frustrating."

This time, in this case, it toppled. Not immediately. But after years of living separately together, Demetri's parents are divorcing. [See how I distanced myself there?] My brother, my sweet, darling, baby brother (who of course is a grown man!) is going through another loss: that of divorce. Whether you want the divorce or not, it's still another loss. And I don't just feel his pain. I feel her pain too. She may have wanted this--but as I said: loss is loss and divorce is not an easy thing. And what does one do with the previous 13+ years of relationship? That cannot simply be tossed away. They have memories that belong only to them--both good and bad; they are theirs and no one else's.

Additionally, our families have melded and that isn't easily undone--and frankly, shouldn't be. Because despite a marriage coming to an end, there is, always, two children common between us all. And one is still here and needs us all. And needs us all to be at peace with one another.

But in the meantime, it sucks, but that's the way it is. I think, sadly, it is hardest on Dante. I could say a lot of what I see him going through trying to figure it all out, but I won't. Let's just say, I carry it for & with him, as well as with my brother. I have a hard time talking with my brother. I don't know why. But I would, quite literally, die for him, if need be and to see him struggle with all of the hurt and pain of the past years has shattered me. He is an incredible parent and I wish he had both his boys with him, but I am so very, very glad, for Dante's sake, that James is the daddy he is. I am so glad that they are together full time. They need each other. They are good for each other. They, them together, are the part of this story that makes my heart sing!

Look at the absolute love there!

But overall, the journey from the initial horror of grief through to the new normal to relative healing (because it's all relative) has be good for all of us...though our love and desire for Demetri never leaves us.



...November...November...November 30, 2009, a pretty little girl named Cora was born. She was perfect in every way. Every way except for her undetected broken heart. A simple pulse oxometer test performed prior to leaving the hospital after she was born might have caught it. Instead, she died in her mother's arms in the middle of the night, 5 days later. Her mother, Kristine, was the 1st person whom I really connected with after Demetri died. She didn't care that I was his aunt, not his mom. We would be on Facebook for hours talking about the horror of sudden child-loss. Cora was her 1st born. Kristine, in her grief, in her daughter's name, has gone on to do incredible things for our nation in regards to saving the lives of infants. She got a law passed in her own state, Cora's law, that mandated that all hospitals, and all home births, be required to perform a pulse ox test not just after birth but 48 hours after birth to check that the oxygen saturation levels in the baby's blood--if they are low, tests can be performed to check on the child's hearts and lungs. A simple pulse ox test, non-invasive, in-expensive, life-saving. I love that she did all that while in the depths of despair. She also helped others get this same law passed in their states too. And much, much more.

Kristine  has done amazingly well, especially as of late, in her journey through grief and healing. But still, every year, as these anniversaries roll round, birth and death I feel her loss anew. One can move on in life, but one never, ever, ever forgets or gets over the death of one's child. EVER.







...I will be forever grateful to Kristine, Jill, and Heather who accepted me, a grieving aunt, into their world--that of child-loss grief, as I felt my nephew's loss so deeply and felt I had no where to turn. There aren't really support systems out there for aunts. And you see, I've come to fully realize that during this time, I don't just grieve Demetri's death, I grieve  my loss at never getting to be a mother, as well. From the time I was about 12 or 13, I have carried with me the deep desire to not just be a mother but to carry a child within me. I had been considering IVF when I got sick and learned that my brain was so fragile, that had I become pregnant, it would have killed me (yup, seriously, straight from the neurologist's mouth!). So yeah, that sucked. I found that out in 2008. I went through a lot of counseling concerning this. We lost Demetri in Nov 2009 and because of the health issues that came with my fluctuating hormones, I had a full hysterectomy in March of 2010.

On the one hand, it was the best decision I've ever made: no more hormone fluctuations; no more migraines, no more useless internal organs. I thought it would stop my yearnings. I thought I'd gone through enough counseling. But I think because I'd had these desires and yearnings for something like 26-27 years, it's not like you can just blink and the feelings will go away. Proverbs 13:12 says, "Hope deferred makes the heart sick: but when the desire is fulfilled it is a tree of life." (King James 2000 version). It is hard to get over a permanent deferred hope. I find that, for some reason, I really grieve over this in November. Perhaps it is because a really dear friend of mine really hit the nail on the head when I called to tell her about Demetri when she said that she knew I was going to feel this loss as though it were my own. She was so very, very right. I do and then I feel my own loss. The loss of my own dreams and desires. I may no longer have any of the organs necessary to conceive, but the longing has never gone away. I wonder if it ever will?  In the meantime, I grieve my loss of a child I never had in November (and at Mother's Day).






...So, yeah: October & November are a heavy months for me. And those are the expected things. Then there comes unexpected things: 

*a friend who thought she might have breast cancer (false alarm, thank God!).


*a birthday notice from Facebook for a friend who passed away from cancer last spring (ugh).


*one of my mom's oldest and dearest friends battled breast cancer over 20 years ago. It came back a couple years ago. It's spread. This time it's winning. And I hate it. I grieve for & with her. And her husband. And her kids. And my mama who is there for her friend. She knows that when Judy needs her, she needs to just go! I'll be here praying (& crying).


*my sister's mother-in-law has been battling cancer for some time now, and it moved into her brain. While she came through one open brain surgery well, the surgeons couldn't reach it all, and now it has spread, not just in her brain but to other places in her body--she can actually feel a couple in her leg. I freaking hate cancer. I hate that Mama Sue is going through this. I hate that Papa Tom is going through it--but love how he is standing by her. I hate what each one of her children and each one of their spouses is going through. And then I think of their 11 grandchildren--really 12 because Dante calls them Mama Sue and Papa Tom too. I hate the idea of Sue potentially not being at family gatherings. I grieve for each one of them--Sue, Tom, their 4 kids, their 4 spouses, all those grandkids, all those extended family members (like us!) and friends. Sue's love is far-reaching.




...So, I guess I've had a lot on my mind. On my internal shoulders, so to speak. And it takes me a long time to sort through all that and put it into words. And I guess what tipped me over the edge was that someone near and dear to my heart was at our house last night and said something snippy and rude to me that hurt my feelings. Guess it was the last straw. It was something stupid. But it was enough. Plus she phrased her insult with the words, "Your mama said...blah, blah, blah about you & your behavior." Double slap. (Even though I knew my mom never would have said such a thing about me because a) she doesn't gossip and b) the comment was true, but still...)

So yeah.... I am an empath. And last night I had a bit of a breakdown. A fairly mild one, considering. Just a few tears (one tissue's worth), a lot of words. And a lot of sorting through all of the above.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

*** If you want to read more about empaths, I liked this article. Keeping in mind that most articles I've found tend to put "empaths" in categories with pagans, wiccans, and  psychics, please note that I am using this new, trendy term for something I came to understand about myself years ago: I carry other people's feelings so I can pray for them: I am not just an empath, I am an intercessor. While in the ministry, I also participated in counseling or inner-healing, which is actually referred to in this article, but Jesus was always the focus.
He still is. I rely on him to get me through everything in my life: my illnesses. My own disappointments. My own griefs. My own joys. And, most definitely, the joys & griefs I carry for/with others. As I've said before: He's not my crutch; He's my stretcher! I've tried to learn how much I can carry without being completely unbalanced in my own life. So, unlike this article, I no longer deal with the imbalance of all of the items listed, though I can certainly relate to almost everything on her list. I may feel the heaviness, at times, (like now) but it is because I choose to, not because I cannot help to.***

Some of Demetri's Roses, 2014

Thursday, August 16

Happy 2nd Birthday, Sweet Boy



So, I made a little  birthday video for a friend of mind. But it is too large to upload to a private msg on FB or to email, so now I am resorting to posting it here. Which is really nearly as private since no one really reads my blog (except maybe my mom) as far as I can tell, which is fine with me. It's more of a diary than anything else. :-)

Today is the day my friend (we've never actually met in real life, but only through Facebook & blogging) gave birth to her 3rd child, knowing since 20 weeks gestation that sweet little Joshua had a congenital heart defect and would face many difficulties and surgeries outside the womb and that he might not make it at all. Joshua was a valiant little warrior who fought for over 50 days and endured many medical interventions, but in the end he went home to be with Jesus.

So today, Jill & her family observed Joshua's 2nd birthday without him there to celebrate with them. I can't imagine how difficult that would be as a parent...I've glimpsed it through my brother and sister-in-law, and know the grief of an aunt who misses a nephew, but I do not and cannot begin to imagine how that must feel to a parent. 

But I do know that I want these special friends of mine, whom I've yet to meet in real life, (JillKristineHeather) to know that they are not alone, their precious children are not forgotten, and that I stand with them in their grief and in their journeys toward healing...through the thick and the thin. Because I love them!


So....



Dear Jill,
My mom is so sweet & knows me well & even went out & got cupcakes for today before I woke up knowing I would want to observe Joshua's birth today. She prays for your family too as I read your blog to her and the funny things Caleb & Hannah are always saying.  My 3 y.o. niece loved celebrating Joshua (& so did my mom and I). She had us put on special party clothes & jewelry...and she wore a crown.

It was not at all strange to her to celebrate my friend's baby's birthday, nor was it strange when I said he lived in heaven with God. According to her, she sees angels all the time. I believe her. :-) 

She also decided that since we were celebrating, that it would also be her new invisible friend's birthday (Wilbur apparently turned 3 today) so that is why she has 2 plates in front of her: 1 is Wilbur's and she did NOT touch his cupcake! I think she thought it odd that Joshua & I shared a plate!

Anyway, I wanted to share a little bit more of our birthday party for Joshua and tell you that I love you and have been thinking of you and Shane today and praying for you both as I know this is a bittersweet day. 

Your little love-bug is never far from my mind and will never be forgotten. 

  xoxo  
Mary





Saturday, February 11

Ahhhh....Emails.... (Updated)

Emails You Don't Want to Wake Up to First Thing in the Morning:


Subject Line: Hypertrophic cardiomyopathy

Message: I got home Wednesday night after 19 days (and nights) in the (local) VA Hospitals. The subject line is my main problem. They refuse to give me credit for getting that condition on my own, and insist that it was inherited.

The doctors highly recommend that you get checked for this condition.

The good news is that if I behave myself I've got another 15 or 20 good years to go.

Love, Jim

------------------------------​------------------------------​------------------------------​---------------

Yeah...That would be an email received from my biological father this morning~a rather rare ocurance.

Totally thought this was going to be a forwarded message about CHDsas this is Heart Health Awareness Month and this happends to be Congenital Heart Defect Awareness Week!

But no! My first thoughts:

a) thanks to all my CHD friends and contacts I actually had a vague idea of what that condition was before looking it up

b) Thanks to Jim the heads up that he was in hospital! (not)

c) thanks for another genetic condition from that side of the family to worry about!

d) glad he was ok and sense of humor was in place

After looking up the condition, I've had several of the screening tests a couple years ago but I will follow up with my GP and at least I already know a cardiologist in the area that I like thanks to my stupid "I think I just have a pill stuck in my throat but it could be a heart attack" episode 2 years ago.


~~~~~~~~~~~~~~~~~~~~~~~~

Update
After speaking with Jim, I learned that he had to have a pacemaker installed.
He is on some meds but as my step-mum put it: he is strong as an ox and as soft as a grape.
:-)
And, as some patients with mild forms of hypertrophic cardiomyopathy are only diagnosed by screening echocardiograms because of their known family history, I will probably follow up with my GP to see how to go about having this done.

Monday, December 6

Sweet Remembrance (part 2)

Some may say that one year ago, on this day,
a light went out of the world.

They are wrong.

While you are no longer here with us, your presence is felt
and your light shines brightly.

Few of us had the pleasure of knowing you "in real life,"
but many of us know your story:

Your Life:
The Five Days that truly did Change the World.



Today, once again, we stand with your parents in their grief...but we also celebrate the gift you are.

Monday, November 29

Sweet Remembrance (part 1)

One year ago today, the world was gifted with a glorious baby girl.
Cherished & loved by her parents.
Welcomed by her family.

She gave the world a message of hope & love.

Today we celebrate the birth of Miss Cora Mae McCormick.
A shining light in a (sometimes) dark world.



Today I thank your parents for sharing their precious girl with the world.
I love you Kristine & Ben!

~Mary


Thursday, October 21

Victory~One Step at a Time

This is  a victory for every CHD (Congenital Heart Defect/Disease) child and their parents and for adults living with CHD. Thank you to those moms, like Kristine, who have fought on behalf of their children (like little Cora) to get better recognition of and screening for CHDs in newborns!

Advisory Committee on Heritable Disorders in Newborns and Children

Letter to the Secretary, U.S. Department of Health and Human Services


October 15, 2010
The Honorable Kathleen Sebelius
Secretary of Health and Human Services
200 Independence Avenue, S.W.
Washington, DC 20201

Dear Secretary Sebelius:

The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (the Committee) is charged with making systematic evidence-based and peer-reviewed recommendations that include the heritable disorders that have the potential to affect public health significantly, for which all newborns should be screened. Thus far, nine conditions have been sent to the Committee for consideration of an evidence review and for consideration for addition to the Committee’s Recommended Uniform Screening Panel. In May 2010, Severe Combined Immunodeficiency (SCID) was added to the panel. During the May 13-14, 2010 Committee meeting, the Committee voted to not recommend the addition of Hemoglobin H to the Panel. At the Committee’s most recent meeting on September 17, 2010, the Committee reviewed a final draft report of the evidence review for Critical Congenital Cyanotic Heart Disease and voted to add this disorder to the Panel.

Congenital Heart Disease is an overarching term describing a spectrum of clinical outcomes derived from any number of defects that are present in the structure of the heart at birth. Specific defects may involve the interior walls of the heart, valves inside the heart or the arteries and veins that carry blood to the heart or out to the body. These varied congenital defects change the normal flow of blood through the heart, leading to a range of conditions and symptoms. Congenital Heart Disease affects about 7 to 9 of every 1000 live births in the United States and Europe and is the most common cause of death in the first year of life, with defects accounting for 3% of all infant deaths and more than 40% of all deaths due to congenital malformations. Critical Congenital Heart Disease is a group of defects that cause severe and life-threatening symptoms and require intervention within the first days or first year of life.

Current methods for detecting Congenital Heart Disease generally include prenatal ultrasound screening and careful and repeated clinical examinations, both in the nursery and as part of routine well-child care. Critical Congenital Heart Disease is often missed during the routine clinical exam that generally is scheduled prior to a newborn’s discharge and many cases of Critical Congenital Cyanotic Heart Disease are missed by discharge and post-discharge clinical exams. A large epidemiological population-based study showed that 78% of cases with hypoplastic left heart syndrome (HLHS) were discharged from hospital before diagnosis. HLHS is universally fatal without surgical intervention, sometimes within the first days of life, and the vast majority of deaths in this patient population occur within the first months of life. Fetal ultrasound screening programs improve detection of major congenital heart defects; however, prenatal diagnosis alone picks up less than half of all cases.

Newborn screening using pulse oximetry for detecting Critical Congenital Cyanotic Heart Disease was examined by the Committee’s evidence review workgroup. Pulse oximetry is a method to augment current approaches (clinical exam and prenatal ultrasound) for the detection of Critical Congenital Cyanotic Heart Disease. Newborn screening using pulse oximetry is a test that occurs at the bedside (in the nursery or otherwise) similar to newborn screening for congenital hearing impairment. Pulse oximetry is a non-invasive test that estimates the percentage of hemoglobin in blood that is saturated with oxygen. While some types of Critical Congenital Heart Disease may present with hypoxemia, they do so only some of the time and are therefore less likely to be detected by pulse oximetry screening. Neonates with abnormal pulse oximetry screening results need confirmatory testing for the cause of the cyanosis, and immediate intervention. Virtually every hospital, even small ones, frequently uses pulse oximetry as a standard of care in their newborn nurseries.

When developing its recommendations to the Secretary, the Committee considers the nature of the science itself underlying the potential additions of the technology and the heritable conditions to the Committee’s Recommended Uniform Screening Panel as well as the public health implications of implementation. Although there are recognizable evidence gaps (for example, standardization of screening protocol) there are compelling reasons for recommending screening newborns for Critical Congenital Cyanotic Heart Disease.

The Committee therefore recommends the addition of Critical Congenital Cyanotic Heart Disease to the Committee’s Recommended Uniform Screening Panel with the understanding that the following activities will also take place in a timely manner:

1. The National Institutes of Health shall fund research activities to determine the relationships among the screening technology, diagnostic processes, care provided, and the health outcomes of affected newborns with Critical Congenital Cyanotic Heart Disease as a result of prospective newborn screening;

2. The Centers for Disease Control and Prevention shall fund surveillance activities to monitor the Critical Congenital Cyanotic Heart Disease link to infant mortality and other health outcomes;

3. The Health Resources and Services Administration shall guide the development of screening standards and infrastructure needed for the implementation of a public health approach to point of service screening for Critical Congenital Cyanotic Heart Disease; and

4. The Health Resources and Services Administration shall fund the development of, in collaboration with public health and health care professional organizations and families, appropriate education and training materials for families and public health and health care professionals relevant to the screening and treatment of Critical Congenital Cyanotic Heart Disease.

The Committee fully recognizes that the various Agencies within HHS determine and carry out their missions within their goals and the budgets which they have available.

Sincerely yours,
R. Rodney Howell, M.D.
Chairperson

Source:
http://www.hrsa.gov/heritabledisorderscommittee/correspondence/October15th2010letter.htm
The Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) was chartered in February 2003 to advise the Secretary regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. SACHDNC assists the Secretary, U.S. Department of Health and Human Services, specifically by providing:
-advice and recommendations concerning the grants and projects authorized under the Heritable Disorders Program;
-technical information to develop policies and priorities for this program that will enhance the ability of the State and local health agencies to provide for newborn and child screening, counseling and health care services for newborns and children having or at risk for heritable disorders; and
-recommendations, advice or information that may be necessary to enhance, expand or improve the ability of the Secretary to reduce the mortality or morbidity in newborns and children from heritable disorders.
 
Please visit this site to learn more about what tests should be done on your newborn prior to you checking out of the hospital. You can also learn more about CHDs as well read other helpful facts for any expecting parents at Cora's Story.

Wednesday, September 8

The Post Every Pregnant Woman Should Read...

...This post is courtesy of Cora's Story and written by Cora's mom & my friend, Kristine. But I agree: definitely a post every pregnant woman (or even any woman thinking of getting pregnant) should read:



The post every pregnant woman should read.
by Kristine Brite McCormick



I decided to write it all down. Everything I wished I'd known about the most common birth defect. I know when I was pregnant, reading information about SIDS or car seat safety was tough, but after realizing that knowledge might save my child's life should they have one of those conditions, I powered through.


Reading about CHD is something every pregnant woman should take a few moments to do. Knowing the signs and symptoms and researching detection methods saves lives.


I know sharing Cora's Story with pregnant friends and family isn't always easy. But, I hope that you'll help. That you'll share this post (share on Facebook or Twitter). No family should ever be blindsided by the most common of all birth defects, occurring in about 1 in 100 births. Just remember, I'm not a doctor. Just a mom.

I present to you, a crash course in congenital heart defects (CHD), or what I wished I'd known about CHD before giving birth.

I found out after my daughter died that she had a congenital heart defect. When I first heard about it, I thought it must be something rare, for me, an educated woman that read everything I could while pregnant to no nothing about it. Turns out, it's not rare at all as far as medical issues in children go. Congenital heart defects are a leading cause of death in children and infants.

Some places, name CHD as the leading cause of death in infants. But, and this is a huge but, most CHD children live. In fact, medicine has improved outcomes for these patients so well, that more adults currently live with CHD than children. It's a hidden disability for these adult and children patients.


About CHD


Over 35 different types of CHD are known, and each defect looks a bit different in each patient. So, each CHD heart is like a snowflake, no two alike. Chances are you know someone with a CHD. Some defects require nothing but an extra doctor's visit every few years, while some are more serious and require a series of surgeries. Often someone figures out that they or their child has a CHD after talking to me about Cora's story. They just weren't aware because the doctor never used the term "congenital heart" with them.


While we're on the subject, congenital heart means simply born with, so a person with CHD is always born with the issues.


The exact cause of CHD isn't know. There's a genetic link, but CHD can happen to anyone. For example, there's no known CHD background on either side of Cora's family.

Nothing detects congenital heart defects all the time. But, early detection improves outcomes. The defects can go undetected into adulthood.


There's not really a cure for CHD either. Surgery can mend the heart and medications can keep things under control.

This makes CHD even more scary. Awareness doesn't mean much unless there's a reason to make everyone aware. And, there are things that pregnant woman can do to reduce the odds of having a CHD baby, having a child go undetected, and picking up on the signs of a CHD.


While Pregnant

Take a folic acid supplement. In fact, talk to your doctor about starting this before you're pregnant. There's a link to folic acid deficiency and CHD.


Don't smoke even if you're thinking about getting pregnant. Quitting when you find out isn't really an option. The heart develops early in pregnancy.

You know the ultrasound? The big one around 20 weeks where you find out if you're having a boy or girl? It's also to look at the baby's development. Ask your ultrasound technician about the heart and if all chambers are present.


After Birth


Ultrasounds, fetal echos, and doctor suspicion after noticing irregular in utero heart rates all lead to detection. But, many defects aren't found until later.


Ask if the doctors or nurses hear a murmur. A murmur often occurs and can be harmless, but can signal something else.

Request your child be screened with pulse oximetry after 24 hours of life. Your baby should be calmed and anything below a 95 might signal a need for extra testing. Talk to your doctor about adding the pulse oximetry in while your child is at the hospital. Some hospitals routinely use this simple, cheap, noninvasive test, but others don't. This easy test saves lives. Ask for it.

Memorize warnings signs of a possible congenital heart defect. In a newborn, dusky coloring, turning blue, trouble feeding, rapid breathing, sweating along the forehead, and tiring easily are warning signs. Report any symptoms to a doctor and request an examination.


Please share this important post to bring us one step closer to making sure every mother, father, and expecting parent knows about the most common birth defect.

Follow Cora's Story here:
 
 
or here:

                       


 
Thank you, Kristine, for taking the time to write this & to inform people of
some of the "basics" of CHD!
I love and admire you greatly!!!

Friday, July 30

Wear Pink for Cora


Wear Pink For Cora

Today is July 30th...8 months since little Cora was born.
In honor of their beautiful daughter, her wonderful parents launched
Wear Pink for Cora.

On the 30th of every month people around the world wear pink to honor Cora but this day isn't just about wearing pink. It's a day set aside to do acts of kindness, perform good deeds, show compassion, express love, and much, much more.

To read just a sampling of what people did today, click on the
Wear Pink for Cora link above.

To read the story of Cora's brief but beautiful life and her legacy, visit Cora's mommy's blog.

Once you read her story and see what has been done in her name, you'll find that Cora will grab your heartstrings and suddenly you want every day to be Wear Pink for Cora day~your life will be changed for the better and you'll want to reach out and
touch someone else's life for the better too.



Sending love out to Ben & Kristine on this special day.

Tuesday, March 30

Wearing Pink


Today is Cora's birthday...I'm wearing pink in her honor & to get out word on the impact of Congenital Heart Diseases and the importance of having a  Pulse Oximetry done on every newborn.


My niece, our little TeaRose had this test done~but I didn't realize what it was until I met Cora's mommy who explained what it was and its importance. I was surprised to learn that this simple, inexpensive test isn't done by every hospital in the US. If it had been done, perhaps Cora would be here to observe her birthday with us.........


Thinking of you today, sweet girl!

Sunday, February 21

Cora's Story

Please, please, please: if you think of her & her husband, send loving thoughts, and tender prayers to my new friend, Kristine.

Their precious daughter, Cora, passed away after 5 brief, but love-filled, days on earth.

Cora's parents are grieving deeply but also fighting a good fight on behalf of Cora.

Please visit Cora's Story to learn more about the impact of Congenital Heart Disease (CHD) and how you can pass the word along to expectant friends & family about a simple test that should be done after every birth that can literally save a child's life.

Keep this family in your prayers, please. They need all the support they can get. And as you do, please remember my brother & sister-in-law too. Grief is a long and weary process.

Isn't Cora a pretty baby???

With much love going out to Kristine & Ben,
~Mary