In the last few weeks, I have entertained leaving the CHD community for good.  I never thought I would feel that way and truthfully, that’s why I’m writing this blog–because I hope that somehow this can make the difference we all need.

I read once that Christian’s are the only ones who shoot their wounded but I’ve discovered that statement simply is not true because I’ve watched the ready-aim-fire taking place in the most unimaginible place ever.  HERE.  In the CHD community.  I’ve watched battles for territory, proprietary rights & people who flat out refuse to unite with one another because of any myriad of differences.  I’ve watched as people refused to support each other because their kid is an angel while someone elses’ kid is a warrior.  I’ve watched adult survivors who fight with parents and parents who fight with each other and…I’ve shaken my head in shock at times while at other times been heartbroken.

I don’t understand this.  I really don’t.  I totally understand that we all have a different experience but guess what?  We’re STILL all fighting the same enemy.  We’ve all grieved, we’ve all lost sleep, we’ve all had fear, we’ve all had nightmares, we’ve all lost friends & family and we’ve all faced this bastard that keeps killing & hurting our kids.  Your pain is different than mine but that does not make either one of our pain any less valid.  My CHD child is alive, thank God but the truth is, most of us with CHD warriors live with the blood-chilling awareness that the end could come at any time.  Does this make our pain less than someone who lost their child after only a few days?  Who knows?  Who can tell?  Does it really matter?

What I do know is this.  We’re in this together, no matter what our particular stories.  One of my favorite quotes is ‘be kind for everyone you meet is fighting a hard battle” and that would be no better applied than here.  We may disagree with one another but here’s the challenge I am issuing from one heart parent to the rest:

Let’s be kind to one another.  We don’t always have to agree but we should always respect other’s because we just don’t now what this journey has cost them.  If we don’t agree, we will keep it private and between us and will not bring the entire community into it (i.e. mass messages & status updates slamming other parents).  If we can’t solve the problem, we will just agree to disagree without making a huge fuss about it.  We will understand that many of us are WOUNDED, TRAUMATIZED & may be acting out of our own pain.  We will not judge it, but we will offer as much help as we can and if we can’t offer help, we will at least not offer more pain.  The truth is, many people in this community are fragile & we don’t know what could be the “last straw” or the thing that pushes them over the edge.  God forbid that should come from any of us.

A kingdom divided can’t stand, friends.  Is it any wonder we see very little progress in CHD awareness when the community members are shooting their wounded?  It’s time to lay down our weapons that have been directed at each other and start aiming them where they should be…at Congenital Heart Defects & bringing awareness, impacting lives and helping other families.

With love,

Lisa Basquez

Founder & President

Gabriel’s Gift

www.gabrielsgift.net

James was born with a prenatally diagnosed coarctation of the aorta. I wish I knew then what I know now. So let me share it with you.

These are some things I have learned along the way to becoming a volunteer patient advocate.
Overall the best advice I have garnered was from a fellow lion mom whose son died from preventable medical errors. Helen Haskell, founder of Mothers Against Medical Errors, shared with me three over-riding principles to advocate for safe health care.

“Be patient, polite, and persistent.”
(Of course, when your child is in medical crisis – patience and manners are luxuries you don’t have. I will write more on what to do on that later.)

Abby was diagnosed with Tetralogy of Fallot at three-days-old. I never experienced the infamous 3 options presented to mothers who are diagnosed in-utero. I don’t know what that would feel like or what kind of emotions would run through your mind, both upon hearing the diagnosis and during the remaining months of pregnancy. I had a breathing little baby in my arms that I had fallen head over heels for. Her silky black curls, her beautiful blue eyes, the smell of her sweet breath, her soft skin…I knew that I would fight to keep her alive. I would go to whatever lengths I had to and beyond to keep her here.

This post has nothing to do with my stand on abortion or whether I think it is right or wrong. It has to do with a medical professional giving incomplete information to parents who were diagnosed in utero with Tetralogy of Fallot and trisomy 21. It has to do with that father spreading the word, to who knows what ends of the Earth, that Tetralogy of Fallot and trisomy 21 are conditions that are incompatible with life.

I came across a pro-choice blog in my searches. The blog had a post by a father. They were expecting twins. A healthy son and a son with birth defects. The “sick” son or the child this father refers to as “angel baby” was diagnosed with Tetralogy of Fallot. After receiving the diagnosis, the father stated that the doctor told them “the baby’s condition was inconsistent with life outside the womb.”

Here my heart skipped a beat. I caught my breath. My stomach flipped. I immediately thought of my beautiful ten-year-old daughter who lives everyday to the fullest. She loves Taylor Swift and Lady Gaga’s music. She watches ICarly. She loves to curl up on her bed with a book and she READS and READS like no child I’ve ever met. She is hardly inconsistent with LIFE!

These parents later were told that their son also had trisomy 21. A condition that is nearly identical to Down’s Syndrome and often present with Tetralogy of Fallot. They were told by a neurologist that he had definitely had a stroke in utero. They were also told he had a webbed neck, clubbed feet, tumors and cysts, a small brain, a deformed face, and a deformed nose high on his face.

Granted, this baby sounds like he had severe defects…as far as they could tell by the 26th week of gestation. They were told that if “Angel Baby were to survive birth, and the first 30 seconds of life, he might never attain any degree of consciousness or have any meaningful life or interaction with any one or anything.” The doctor went on to tell them that “to call Angel Baby “retarded” would be a great compliment.”

The parents decided to inject their angel baby with a shot of potassium to the heart, killing him. At 35 weeks both babies were delivered C-section. A healthy son and the deceased fetus, whose “profound malformations of his heart and nervous system” were “inconsistent with life outside the womb.”

I don’t profess that these parents should have attempted to have and raise their angel baby. I don’t profess that the choices they made were wrong. They made choices based on their medical advice and the choices they felt best served their son’s twin and the mother’s life. They did what doctor’s encouraged.

What I do profess is that the article is presented in a way that makes it seem like Tetralogy of Fallot is an untreatable heart ailment. And I profess that the article makes it seem like having trisomy 21 and Tetralogy of Fallot is something so terrible that death is preferable to these abhorrent conditions, when in fact I hope beyond hope that it was other serious defects that made the medical doctors encourage abortion. What I profess is that the article is close to negligent and leads others who find it to believe that children like my daughter and others who have trisomy 21 to deal with as well, should be aborted because their lives are not compatible to living. I profess that the doctor’s who handled this case were also negligent if they led the couple to believe that it was because of the heart condition that made the life of this baby not worth giving a chance.

I am so happy I found out about my daughter’s beautiful heart…after. The emotions were hard to deal with. The grief was overwhelming for days. The fear and anxiety compounded the normal emotional task of birthing and caring for a newborn. But, no doctor ever told me my baby’s life would not be worth keeping. No one ever encouraged me to abort the life of this baby…who also had other congenital issues that could have led them to believe she was severely handicapped as well. No one ever made me think that my daughter’s life wasn’t worth every last ounce of fight we had to keep her here. I hope that all those of you who find this know that Tetralogy of Fallot is most definitely compatible with life. I hope you know that trisomy 21 children are amazingly beautiful children. I hope you know that those of us with children with perfect broken hearts wouldn’t trade them for the world!!! They are worth every second or minute or day or week or month or year that we get to spend with them in our arms…loving them and feeling of their amazing and tremendous spirits.

They are most certainly compatible with LIFE!

The Patient Protection and Affordable Care Law
a.k.a. H.R.3590

This is current U.S. law regarding to Congenital Heart Defects

SEC. 10411. PROGRAMS RELATING TO CONGENITAL HEART DISEASE.

(a) Short Title- This subtitle may be cited as the ‘Congenital Heart Futures Act’.

(b) Programs Relating to Congenital Heart Disease-

(1) NATIONAL CONGENITAL HEART DISEASE SURVEILLANCE SYSTEM- Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.), as amended by section 5405, is further amended by adding at the end the following:

‘SEC. 399V-2. NATIONAL CONGENITAL HEART DISEASE SURVEILLANCE SYSTEM.

‘(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may–

‘(1) enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a nationally-representative, population-based surveillance system that compiles data concerning actual occurrences of congenital heart disease, to be known as the ‘National Congenital Heart Disease Surveillance System’; or

‘(2) award a grant to one eligible entity to undertake the activities described in paragraph (1).

‘(b) Purpose- The purpose of the Congenital Heart Disease Surveillance System shall be to facilitate further research into the types of health services patients use and to identify possible areas for educational outreach and prevention in accordance with standard practices of the Centers for Disease Control and Prevention.

‘(c) Content- The Congenital Heart Disease Surveillance System–

‘(1) may include information concerning the incidence and prevalence of congenital heart disease in the United States;

‘(2) may be used to collect and store data on congenital heart disease, including data concerning–

‘(A) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease;

‘(B) risk factors associated with the disease;

‘(C) causation of the disease;

‘(D) treatment approaches; and

‘(E) outcome measures, such that analysis of the outcome measures will allow derivation of evidence-based best practices and guidelines for congenital heart disease patients; and

‘(3) may ensure the collection and analysis of longitudinal data related to individuals of all ages with congenital heart disease, including infants, young children, adolescents, and adults of all ages.

‘(d) Public Access- The Congenital Heart Disease Surveillance System shall be made available to the public, as appropriate, including congenital heart disease researchers.

‘(e) Patient Privacy- The Secretary shall ensure that the Congenital Heart Disease Surveillance System is maintained in a manner that complies with the regulations promulgated under section 264 of the Health Insurance Portability and Accountability Act of 1996.

‘(f) Eligibility for Grant- To be eligible to receive a grant under subsection (a)(2), an entity shall–

‘(1) be a public or private nonprofit entity with specialized experience in congenital heart disease; and

‘(2) submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require.’.

(2) CONGENITAL HEART DISEASE RESEARCH- Subpart 2 of part C of title IV of the Public Health Service Act (42 U.S.C. 285b et seq.) is amended by adding at the end the following:

‘SEC. 425. CONGENITAL HEART DISEASE.

‘(a) In General- The Director of the Institute may expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease, which may include congenital heart disease research with respect to–

‘(1) causation of congenital heart disease, including genetic causes;

‘(2) long-term outcomes in individuals with congenital heart disease, including infants, children, teenagers, adults, and elderly individuals;

‘(3) diagnosis, treatment, and prevention;

‘(4) studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with congenital heart disease; and

‘(5) identifying barriers to life-long care for individuals with congenital heart disease.

‘(b) Coordination of Research Activities- The Director of the Institute may coordinate research efforts related to congenital heart disease among multiple research institutions and may develop research networks.

‘(c) Minority and Medically Underserved Communities- In carrying out the activities described in this section, the Director of the Institute shall consider the application of such research and other activities to minority and medically underserved communities.’.

(c) Authorization of Appropriations- There are authorized to be appropriated to carry out the amendments made by this section such sums as may be necessary for each of fiscal years 2011 through 2015.

On March 12 2010 Kimmy turned one!! I didn’t know if we would be able to celebrate this day with her!! I know the feelings that I have felt when we found out that Kimmy hadCHDs is still there. I think I felt every emotion possible scared sick to my stomach joy proud sad every emotion showed through. I would cry alittle then I would cry an ocean. We were able to bring Kimmy home early November. Thank God!! I was so glad she would be home for her big sisters B Day and the holidays. We had just moved in October to a house!! We were sohappy but then the visits to Chicago started up again. UGH we go up there for a 0930 appointment endup home around700 Pm!! The drive the waiting the Echos the ultrasound the Vitals the catching up and trying to leave with out seeing somone else on the way out we want to share Kimmy with her “2nd family” but on our terms sometimes we are just to tired we want to get back home ASAP. Every appointment I relive all the emotions everytime I see a baby in a store in the hospital resturant where ever I yearn for Kimmy when she’s in Chicago!!  We bring her up to Rush and it’s the same thing We are asked by security whose the patient when they had the Swine Flu precautions out I had just told him we were going to the 7th floor to the Pediatric cardiac clinic!! Is Cardiac such a foreign word??? We go to pre op and we just want to get it over with andare pretty confident but then that Dark Cloud starts to lurk behind us. We follow the nurses up to a exam room for the temp weight etc. Everyone is admiring Kimmy she’s so cute she’s so small and then What’s she here for. Cardiac cath we answer she has multiple CHD’s there’s that feeling that sick to my stomach feeling the emptiness. The whispers as we are taking Kimmy to her little spot in Pre op.Oh look at the Little baby wonder what’s wrong with her ? That feeling starts to come back. It’s time to say that word again CHD but to make sure everyone knows what it is we say the hole meaning too.The Joy when we hear she looks so good and is so strong Yup she’s our little fighter and miracle!! We get to hear five hours later she’s doing good but her shunt was closed a bit!! So they ballooned it and we will be spending the night! The Dark Blob is tapping on my shoulder again but he didn’t get through this time She made it through with flying colors they were taking her off the vent right away she was very alert!! Yes the wait  was over!! Nothing like pushing an empty stroller around a hospital!! We had a little Baby Bear coverup buttoned in it was dads way of it not falling out or off I thought it was funny here we are pushing an empty stroller around till we put it in the van. The stares were interesting to say the least. We get up to Recovery and there’s Kimmy rollin around trying to pull everything out. Yup she’s fine back to her normal self.  Felt bad for the nurses though they would walk up to her and she would cry. We got upstairs and Becki one of her favorite nurses was going to get her set up in her bed!! She calmed down alittle. Two weeks went by we learned yes she will need the Glenn procedure and the repairs that they were putting off. We had Early Childhood services come in and we had requested a dietician even though we thought it would be good to have so close to home and that maybe we might learn something. From the start she kept telling us Dad wasn’t doing things right and we shouldn’t be giving her certain things it wasn’t age apropriate. Rush said give her anything and everything!! We have a long list of foods. She does require a lot of attention and she aquried Seperation anxiety in the Hospital we can’t leave her sight sometimes otherwise she starts crying and gets all sweaty and will keep crying. Sometimes we are so tired that we might leave toys on the floor we will pick them up the next morning. Kimmy has CHD’s but she can go outside it was 60 and dad had her in her coverup oh and heaven’s to betsy she was in the stroller and had a bottle of Chocolate pedia sure next to her. We are over joyed that she will pick up her bottle and drink from it and yes pedia sure leaves chocolate mustaches we know that but when you are trying to get things done in the house or outside is a chocolate mustache really that bad??  You want Mom to call you sorry Dad knows what he’s doing and so do I ?? Dad mixed her formula from day one and so have I we have put NG tubes in so many times it would make your head spin. Dad and I had to learn CPR and warning signs that Kimmy could be in distress. We know how to use a pulse ox!!  When we tell you Kimmy is labeled as failure to thrive and she won’t gain weight in the hospital either. We thought you were here to help! Instead you made more stress. I should of cancelled your services after the second time but i thought you would call the DRs and read the countless papers we have from the hospital. We thought since you are a RN LPN this would be familar wrong it wasn’t. I keep having the Dark Blob tapping me on my shoulder. I try to shake it away but he keeps creeping up. Iam pretty sure that everything will be ok on the 23 but I will still have the blob bringing that sick feeling back and the pain of turning you over to the nurse to take you to the OR! I will never get used to that Feeling a nd I will cry me an ocean when I see children in the waiting area etc! I will keep fighting to get people to understand our life with CHD. I will fight for you. I can’t call CHD a monster it has taught us alot of things lifes little lessons. WE will never take anything for granted and again and we will always be grateful to have you.  So I guess CHD is bad but also has a purpose in our lives. It’s amazing how many people think they are god and theirword is golden. I hope that each one we encounter that we end teaching them something like compassion understanding and that theree are cases of complex CHDs that cannot be solved on the first try and that you shouldnot judge a book by its cover!! This has become our life we can put off picking up toys we can put off other appointments  we can wait to go to the mall to do normal things but we can’t let Kimmy miss her appointments and if it takes awhile to feed her it usually doesn’t but if it does then we will take the time. If we have to do things with Kimmy on our hip we will because that makes it less stressful for her. We wouldn’t wish this on anyone it’s that we would like some understanding that we are doing everything for Kimmy and that we know what we are talikng about. Iam praying that CHD will be known as much as cancer and that it does affect babies!! If anyone knows where sleep is hiding could you send him my way??  We didn’t chose this life with CHD but we are adjusting and coping the way we know how!

Attention all Denver readers. Your legislators are not co-sponsoring this bill that was introduced by Senator Dick Durbin (IL) in March 2009. Assistant Senate Majority Leader Richard Durbin (D-IL) introduced the “Congenital
Heart Futures Act” in the U.S. Senate in March of this year. The act addresses the
needs of the millions of children and adults in this country affected by congenital heart
defects, which are America’s most common birth defects, affecting approximately one
out of every 120 babies born.

The Senate health care reform bill, “Patient Protection and Affordable Care Act,”
authorizes federal funding for congenital heart disease (CHD) research and calls for the
creation of a comprehensive nationwide registry of actual occurrences of CHD.
Establishment of a registry will improve data collection and centralize medical research
on CHD. Federal support for CHD surveillance and research will help prevent
premature death and disability in this rapidly growing and severely underserved
population.

Please go to the website listed below. It will provide you with the information needed (sample letter, links to your legislators, etc) to help you and your friends lobby for this much needed legislation!

https://www.achaheart.org/getinvolved/lobby_day.php

TODAY, ON FEBRUARY 8, THOMAS JAY ANDERSON, MY SON, ACCEPTED A PROCLAMATION FROM MAYOR HOBART, OF SIOUX CITY, IOWA, DECLARING FEBRUARY 7-14 AS CONGENITAL HEART DEFECT AWARENESS WEEK. THOMAS IS A CHD WARRIOR/SURVIVOR, AND HAD OPEN HEART SURGERY FOR TETRALOGY OF FALLOT WHEN HE WAS 8 MONTHS OLD. HE IS NOW A 7 1/2 YEAR OLD IN 2ND GRADE, WHO LOVES TO PLAY BASEBALL AND BASKETBALL AND HIS FAVORITE SUBJECT IS MATH. HAD TO SHARE THIS, AS THIS WAS A SPECIAL MOMENT FOR OUR SIOUX CITY FAMILY, AS OUR 20 MONTH OLD, JONATHAN ANTHONY ANDERSON, IS ALSO A CHD WARRIOR/SURVIVOR, BORN WITH TRANSPOSITION OF THE GREAT ARTERIES, DOUBLE OUTLET RIGHT VENTRICLE, AND PULMONARY ATRESIA, AND HAS GONE THROUGH 2 HEART CATHS AND 2 OPEN HEART SURGERIES ALREADY; HE’S FULL OF SPUNK AND ATTITUDE AND HAS CAUGHT UP SO MUCH, EVEN AFTER SPENDING 3 MONTHS IN THE HOSPITAL FROM BIRTH UNTIL NOW!  I ALSO SPOKE A FEW WORDS THANKING THEM FOR THIS PROCLAMATION, BUT IT WAS SUCH A HEART WARMING EXPERIENCE, I HAD TO MUMBLE THROUGH IT A BIT AND GOT CHOKED UP A FEW MOMENTS:

Thank you Mayor Hobart…I will proudly accept this proclamation from Sioux City, on behalf of all CHD Warriors, in declaring February 7-14 as Congenital Heart Defect Awareness Week! ♥ ♥ ♥ God Bless all of our CHD Warriors and Angels and Families ♥ ♥ ♥ I am blessed with 2 CHD Warriors and SURVIVORS, Thomas and Jonathan, and my son Samuel, my husband, and myself will ALWAYS stand by and help our boys push for more AWARENESS and RESEARCH ♥ ♥ ♥ I hope with this continued support from our city and state for awareness, that more expecting mothers won’t ONLY have ultrasounds done to see what the sex of their baby is, but also, at the same time take an extra 15 minutes in having an echocardiogram done, to makes sure their babies’ hearts look good and HEALTHY, and with this, will also have mandatory oximetry tests done on ALL newborns, which is cost effective and takes less than 5 minutes, to possibly save a babies’ life. Without the oximetry test and our amazing doctor’s intuition, Thomas may not be here today, and because of Thomas’ pre-existing condition, we were given echocardiograms on both Samuel and Jonathan, while I was pregnant, where most wouldn’t have been given this test, and we found out about Jonathan’s severe heart condition. Because of the results of the echocardiogram, the doctor’s were ready to perform emergency surgery hours after Jonathan was born and his life was saved. Thank you again, Mayor Mike Hobart, the Council members, and all of Sioux City for your continued support. I truly believe this is a step forward in saving many of our children’s lives. Thank you and God Bless.

MOMENTS LIKE THESE MAKE ME SEE HOPE FOR OUR CHILDREN’S FUTURE, AND OUR CHILDREN’S CHILDREN’S FUTURES. THIS ONE WAS FOR ALL THE CHDers (ANGELS AND SURVIVORS)!!! ♥ ♥ ♥

Our son London II was born on July 28, 2000.  On July 30, 2000 he literally crashed & had to be stabilized and life flighted to UC Davis where he was hooked up to all kinds of wires & machines & IV meds.  That was the day we were told he had a CHD called Hypoplastic Left Heart Syndrome or HLHS.  We were given 3 options and his odds of living through them; Compassionate Care (take him home to die), a heart transplant (baby hearts are really hard to find) & if you can find one, the odds of him living through the surgery were 30%, and the last option was a series of at least 3 open heart surgeries with a 30% chance of making it through the first one.  We decided that we just had to give him a chance at life, even after his own cardiologist told us that if this were his child he would take him home to die.  We chose the 3 surgeries.  London had his 1st surgery at just 5 days old.  We spent the next 6 weeks in the NICU.  We were not allowed to hold him for almost 2 weeks after his surgery.  He finally went home where we stayed until his 2nd surgery at 7 months.  He spent 5 days in the hospital for that one.  After this surgery he had a few problems with collaterals (extra veins that grow from the heart to the lungs to try to compensate for low blood oxygen levels, these sound like they would be good, but they are bad for a heart child), so he had several heart caths and ended up having to have his 3rd surgery early.  So he had his 3rd open heart surgery at 2 years of age, 1 week after he turned 2 in fact.  And 1 week later, due to fluid & infection complications, he had his 4th open heart surgery.  Because of these complications we spent 6 weeks in the hospital and once again I was not allowed to hold my baby for 2 weeks after his surgery.  Thank god we have been fortunate enough to have not had any surgeries or hospitalizations in the last 7 1/2 years and he is now doing wonderful.  However, his heart is not “fixed”.  This is something he will have to deal with for the rest of his life, after all, he was born with only half a heart.  No one knows what the future holds for these children, the oldest HLHS’ers are in their early 30′s, babies born with HLHS did not survive before that.  So we don’t know how long he will live, we don’t know if he is going to outlive us, something that all parents look forward to and a lot of parents take for granted.  As parents we don’t want to think about ever having to bury your child, but as HLHS parents most of us deal with this thought on a daily basis as it is a very real possibility.  We certainly don’t want to think about it, but it can’t be helped, since we don’t have any idea what the future holds for these children.  This has been just a glimpse into my life of being a parent to a child with HLHS.  And even with knowing what I know now about this life, I would not trade him for the world, he is the most loving child any one could ever ask for.

CHD’s are real!  Before London was born, I had heard of CHD’s, but from my experience, they were not that bad, the people I knew who had them were older, like my dad, and he did not seem to have problems that I knew of at that time and did not until he was older.  My grandma had a CHD and her son (my uncle) was born with the same one, but my grandma lived to her 80′s and did not have any heart surgeries.  It wasn’t until London that I realized that most defects are very serious and many are fatal without surgery, I also did not realize just how many people were affected by them, since I had only heard of the few in my family, none of our many friends had any.  Now I know it is a very serious problem and we need more funding for research to be done on CHD’s and also we want to make everyone aware so that no parent feels alone in this world like London & I did when London was younger, we knew no one until he was a little older with HLHS.  That is why Shannon & I founded the Hope for HLHS group shortly after we met, the group was created in 2002.  Go to http://www.hopeforhlhs.com for more information on HLHS and a link to join our group if you are affected by HLHS.

1 IN 100 BABIES WILL BE BORN WITH A CHD THIS YEAR!

Congenital Heart Defects are the #1 birth defect.

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.

Also, just look around at my friends and you will see the special CHD Tags I have made for their children, you will see a lot of tags and this is just a handful of all the people who are affected by CHD in some way in their life.  Just to give you an idea of just how many people are affected by it.  My Facebook profile is http://www.facebook.com/ramobley.  Anyone affected by CHD’s or just wanting to help spread awareness or wanting to know more about them is welcome to add me as a friend, just make sure to add to the request why you want to be my friend.

My links:

London’s Website

Hope for HLHS

My Facebook Profile

Just today, I read two separate comments that really made me think about how differently people are affected by Congenital Heart Disease.

On a fellow CHD blogger’s website today, I read how he feels badly about his lacking advocacy back in his college days. Later, I read on Facebook that a person felt the need to remove herself from a CHD group because it was too much to handle, emotionally. What a tangled mess of emotions from a single source!

Back in the 1980′s, I had very little experience with CHD. I went to highschool with a boy who had a pacemaker. That was it. And he didn’t call it CHD, and even bigger, he and his family avoiding talking about it at all.

When my son was born in 1992 with complex CHD, I was totally and completely blindsided.  Since those were the days before home computers and Internet (unless you were rich!), I had no support and no source of knowledge from which to draw. I didn’t even know I could go to another hospital or ask for a second opinion.

When Clint passed away at 9 weeks of age, my days of thinking about CHD were over, or so I thought. I left that children’s hospital for the last time and did my best to leave my CHD thoughts and feelings on the other side of those doors!

For the most part, I did a great job of leaving it all behind. That is, until my youngest son was born with complex CHD thirteen years later.  In 2005, I was not alone. I had the support of people and groups via the Internet. I was able to educate myself about my son’s condition.  There were people who knew about CHD that could answer my questions and supply me with information.

Yes, sometimes CHD is too much. Sometimes, when things are going well and we do not have to think about it every minute of every day, we step aside and take a break. Sometimes. And you know what? That’s okay.  Because, somewhere out there, others are picking up the CHD advocacy slack while we regroup and recharge.  

CHD awareness has come a long way over the past twenty years, but we still have a long way to go.  The important thing to remember is that once you are affected by Congenital Heart Disease, you have a moral obligation to offer your knowledge to those who come after you.

1. You will need your 9 digit zip code to look up your local House Representative. If you do not know it, click here to look it up.
2. To find the email and/or mailing address of the House Representative for your district, click here and enter your 9 digit zip code.
3. Send an email or letter to your local House Representative, asking him/her to support Chloe’s Law – House Bill Number 1604.
4. At the bottom of your email or letter, please include your full name and address, especially the 9 digit zip code, so the House Representative knows that you live in his/her district.

If you need ideas on what to say in your email or letter, here is a sample of what my friend wrote:

Dear Representative XXXXXX,

I have a loved one who was born with a Congenital Heart Defect (CHD) in 2008. Nine hours after Chloe was born, her parents felt there was something wrong with her. They strongly urged the nurses to do more testing on Chloe, even though she scored high on the APGAR tests and was not showing any “classic” signs of illness. A few hours later, the nurses finally did a Pulse Oximetry Screening and discovered that Chloe was born with a rare Congenital Heart Defect. The Pulse Oximetry Screening saved Chloe’s life.

Congenital Heart Defects (CHD) are America’s #1 birth defect. Every 15 minutes, a baby is born with a CHD (American Heart Association). The majority of these baby’s CHDs go undetected during pregnancy (like Chloe’s). Some babies born with a heart defect need oxygen, medication and surgery immediately, so detecting the heart defect before sending them home can save the baby’s life.

Please don’t send a baby home from the hospital too soon. Please support House Bill #1604, Chloe’s Law, which expands the newborn screening requirements in section 191.331 to include Pulse Oximetry Screening prior to discharge of the newborn from the health care facility.

Thank you for being a voice for our community and supporting Chloe’s Law.

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Kelly Manz, Heart Mom to Chloe

http://chdbabies.blogspot.com