Please help me get this legislation passed!



This is an issue very near to me. My first son was diagnosed with a very complex CHD called Hypoplastic Left Heart Syndrome when I was still pregnant. He underwent two major open heart surgeries, ECMO, a heart catheterization, plasmapheresis, and several "minor" surgeries before he passed away at just over a month old.This is K before surgery.Photobucket


Very little is known about what causes most CHDs. Nobody can tell us if there is a genetic factor, or if it was a random occurence. There is very little in the way of research dollars currently, but a bill was introduced in Congess recently that would change that. I'm going to copy and paste an e-mail I received from a group called It's My Heart. I hope you'll take the time to write your representatives in support of this bill.


Dear IMH Supporters,

You did it! Thanks to all your letters, emails, and visits, and the efforts of our partners in the National Congenital Heart Coalition and at the American College of Cardiology, late yesterday the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support. To learn more about the bill visit http://durbin.senate.gov/showRelease.cfm?releaseId=309944


So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute - here's how you do it:1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses 2) Draft your email - (Templates below)3) Make your letter personal to you. The template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started. 4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress. That's all there is to it!


Please forward this email to friends and family to request their participation.If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort. Need more information? Contact advocacy@itsmyheart.org with any questions

TEMPLATE

Dear [Lawmaker name here]


I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570)and help all those born with heart defects live longer, healthier lives.


Congenital heart disease is this country's number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.


----- Insert 2-3 sentences saying why you care - some examples:


From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, "we just don't know". The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.


For a parent:My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.


For a family member or friend:My grandson was born with a complex heart defect and underwent three open heart surgeries before he was three. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to help us help him do well as he gets older. Please help me help my grandson survive to become a healthy, productive parent and grandparent.


From a health care provider:As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.----- To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thanks in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name]
[full mailing address]
[email]

My baby is cuter than your baby
























A Wedding, a Funeral, and a Birthday

This past week was my school district's spring break, so I had 9 whole days of work-free bliss. When the week started, all that we had planned was to attend a good friend's wedding and mark K's second birthday in heaven. As it turned out, we ended up having to drive to Dallas to attend a funeral as well because the younger brother of my husband's best friend passed away from an aggressive cancer.

T was my husband's best friend's brother, and he was only 25 when he passed. He left behind a wife of less than a year. I never met this brother, but I've spent some time with J's (J is my husband) friend. This is the friend that J spent his entire childhood with, and he stood up with J at our wedding. At T's funeral, I felt like a moron for crying, but I couldn't help myself. I was crying out of sympathy for T's mother, because I know what it feels like to bury a son. Something like that is hard whether you bury your baby at 1 month, like I did, or at 25, like she did. You aren't supposed to bury your children. It goes against the natural order of things.

The pastor who gave the funeral service said the standard "God's ways are not our ways" and "God hears our prayers" speech. I've heard that many times in my life, especially back when we attended a super conservative Bible church when I was in high school. I don't know what to think of that. I really don't know what I believe anymore. I prayed and prayed and prayed for K to be healed, but he wasn't. I'm sure T's mother prayed for a cure for her son, and he died too. I don't know. If God can heal the sick, then why does He heal some but not others? Why not my son? Why not T? I guess I'll never understand that one.

The wedding that we went to was on K's second birthday. In a way, it was good that we had something happy to distract us, because we both have been having a hard time with his birthday this year. Some of it is because we also have two nephews that were born within weeks of K, so they both had their second birthdays as well. Some of it is because we now have our handsome little G, so we know exactly what we missed out on with K now. Some of it is just that you never really are "over" losing your child; you learn to live with it, and some days are good while other days are hard.

The person who got married is a girl I've known since high school, so she was around for everything that happened with K. To backtrack a little, dragonflies have come to symbolize K for us. We painted his nursery with dragonfly stamps, and got dragonfly crib bedding for him. His room in the PICU (pediatric intenive care unit) had dragonflies painted on the ceiling. The bride's mother told me that I needed to look closely at her bouquet, so after she was done taking pictures I asked her if I could see it. She'd found tiny little dragonfly appliques and put them on the bouquet in honor of K, since she was getting married on his birthday. I was so touched that she remembered my little boy like that on her special day.

Right now, G is sleeping away in his crib. I wonder if K would have been like G is, happy most of the time and just taking in the world. G is such a laid-back little guy. As long as you keep his tummy full and his diaper clean, he's a happy camper. It's hard to know what K's personality really was because he was kept so sedated most of the time in the PICU, but from what little bit I was able to see he was a lot like G is. I guess I'd like to imagine that my boys would have had a lot in common.

So... happy birthday, K. I'm so sorry you're not here to celebrate it with us, but I'm thankful that in heaven, you have a whole heart instead of half of one. We miss you, and I promise that your little brother will know about you as he grows up.