Hypoplastic Left Heart Syndrome Drives Family To Raise Awareness For Congenital Heart Disease

During Heart Month in February, most people think of adults and heart disease. Too few realize that some 32,000 babies per year are born with congenital heart defects. In fact, it is the #1 birth defect, by far. Some of those defects are so major — such as hypoplastic left heart syndrome (HLHS) — that babies have to undergo open heart surgery as newborns, followed by at least 2 other surgeries as they grow.

Our son, Daniel, was born with HLHS, and we have been struggling with the consequences for 17 years. Our family is passionate about doing everything we can to raise awareness about CHD and to support research that might one day change this — literally — heartbreaking disease.

This year, we went a few steps further to help get the word out. I sent a request to Mayor Parker of Houston and Governor Perry of Texas asking for a Proclamation of CHD Awareness Week. This is something people do in every state, every year to help generate awareness.

And we’re excited to report that our request has been granted by Governor Rick Perry, who proclaimed February 7-14 as Congenital Heart Awareness Week in Texas.

Governor Perry Congenital Heart Week Proclomation
Our family is also participating in the “It’s My Heart Walk”, which raises funds to support CHD research. We sent e-mails to all the major school districts, hospitals and nearby subdivisions requesting that they mention this cause. My daughter took a heart box to her high school and collected donations for the walk. We hosted a party celebrating these donations at our house.

We have spread so much awareness on Facebook with CHD Awareness pictures, stories and links to help others. Our team gets so excited every time we think we have helped someone learn and possibly prevent undetected CHD’s.

Most people don’t know there’s an easy, almost free, non-invasive technique with a little red light taped on their finger or foot for a minute to check the blood-oxygen level. Until the government requires this as one of the 35 newborn screening tests, (many people are working on that,) it is up to you to request it.

We hope that other CHD families will be inspired to follow our lead and raise awareness for congenital heart disease.

Happy Heart Month!

About Rick Westfall, Father of Patient

My name is Rick Westfall. I have a daughter who is 15 and a son who is 17.

We have always lived close to Houston for one reason — Texas Children's Hospital. Cardiac specialists there really make a difference!

Posted in Community, Guest Post, Heart, Philanthropy

38 Responses to Hypoplastic Left Heart Syndrome Drives Family To Raise Awareness For Congenital Heart Disease

  1. Jayne says:

    The Executive Director of It’s My Heart has always professed to give the money from the Heart Walk to Research and NEVER did – It’s the least she can do seeing as she took the group’s name from The Children’s Heart Foundation’s book “It’s My Heart”.

    • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

      I believe if you read carefully we are helping It’s My Heart along with many other things and organizations. This article was not written by them and you should save your comments to their blogs.

      • Jayne says:

        Well – I certainly applaud all your efforts minus the It’s My Heart mention. There is a very good reason why last year almost 100% of the Chapters left the org & 90% of the Board of Directors resigned. I liked your blog up until the mention of this woefully less than worthy Organization. We as CHD advocates deserve better than what turned out to be a place run by a woman who calls volunteers names behind their backs to other volunteers. Please keep up the good works minus It’s My Heart – she doesnt deserve the plug you gave her.

  2. Michael says:

    I use to raise money for It’s My Heart through their annual walk. Once I saw their 990 form posted to their website I stopped raising money for them. I too THOUGHT the money was going to research, however their 990 form shows that one year they donated a whopping $500 to the Children’s Heart Foundation, and other years NOTHING! I also had called them one day to see if they could assist my family with medical bills and was told that they do not help families financially, so what do they do with all that money they raise at that walk?

    • Emily says:

      It’s My Heart’s WHOLE mission is Awareness and Education. No where in the IMH Mission does it say they give money to research. Unfortunately, you need ten’s of millions of dollars to impact research. This organization is about building relationships between families and educating the community.

      The money they raise is used ENTIRELY to build programs at the hospital, such as Support Groups, Crafts in the Heart Clinic, and to support Comfort Bags to EVERY SINGLE FAMILY that has a child that goes in for surgery, just to name a few. They offer events for the famillies, host a Conference every year that brings in world renound surgeons and professionals in the medical community.

      Take some time and come to an event, offer to volunteer, and ask questions! I am sure once you research it, you will find out what an incredible opportunity it is to connect not only parents of CHD kids like me, but to get Kids/Teens/Adults with CHD together. No other organization in Houston is offering any other CHD Support.

  3. Samantha says:

    Rick I applaud your efforts in raising awareness. We too like many others used to walk and raise a lot of money for this organization until we started looking into things and noticing people who had been with the organization for a long time all leaving which is never a good sign. The more questions we asked about things the vaguer answers we were given. Notice how they quit giving scholarships look at the spike in salaries look at “theft” on their books. The only awareness is a pamphlet they put out and those are MINIMAL cost. I hope the director of IMH sees this since she thinks these proclamations are “stupid pieces of paper that do nothing” a direct quote I have heard her say more than once!. This is one of the WORST CHD organizations out there. There are many ,many good ones making a difference and some have been around a long time.

  4. Anonymous says:

    As a former member of the board of directors for It’s My Heart, it is very validating to see that those of us that have left the organization are not the only ones that see the things that have been happening with the Executive Director. It WAS so fulfilling to be able to bring awareness to CHD and to bring families together but to see all of our efforts being tarnished by this woman and the things she has done – and IS doing – has crushed so many of us. We are just parents like all of you that want to see good things happen in the CHD community and have all been so sad and hurt by her and what she has done to this organization that truly HAD so much love and energy behind it. It has become an empty shell of what it was supposed to be.

  5. Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

    Because of everyone’s comments above you have made this blog not appealing for me to send to more people. You made your opinions take away from the purpose of this blog, CHD Awareness.

    Our family has been promoting CHD Awareness week and have done so much to get the word out just to have you try and take the focus off this week and put it elsewhere.

    I am embarrassed that the new parents who read this and was excited to see a “veteran” in Houston with HLHS had to read all the negative post at the bottom. This was for them, not so you all could vent about one thing I mentioned.

    • Emily says:

      Agreed Rick!!! A shame that instead of helping the CHD community, all there is here is complaining. I don’t see anyone here offering anything to CHD Families except hatefulness.

  6. Jayne says:

    I am not finger pointing – I am opening eyes. Just look at the trail of hurt & betrayed CHD advocates she left in her wake. You seem like an honorable man – which is why it pains me to think of her using you. I wish you & your precious son all my best. All you have to do is ask questions about the money – then you will see what we are talking about. Your time & efforts deserve better than a woman who was DISINVITED drom CHD LOBBY DAY by the Children’s Heart Foundation & Adult Congenital Heart Association because she has earned a difficult reputation nationally. I mean, the whole purpose of Lobby Day in DC is to bring as many people as possible & she was told she they didn’t want her & her group attending. If that doesn’t speak volumns I am sorry to see that TCH still permits the association.

    • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

      Why wait to voice your opinion on a week where we are promoting positive influence and awareness of something that affects everyone?
      Start a blog and speak your opinions all year long. I believe people would listen to you more if you present it the right way at the appropriate time.
      How about starting an organization to help donate to parents and CHD research? I would help you market it.

  7. me says:

    Rick,
    I applaud what you are doing. Our son has severe HLHS. The fact is, this isnt meant to be name calling, its facts. Sad facts that an organization that I and many others devoted so much time, energy, love & inspiration to out of care and advocacy on behalf of our children and others fighting CHDs- could steal and use those talents and funds to NOT help our fighters and angels but instead to help themselves. These are issues regarding this organization which MUST come out because why encourage people with false hopes to contact this group, that is mystifyingly still associated with TCH, only to be turned away or let down when they need support most? From my experience, in having invested so much, and seeing so much NOT happen, I am very grateful that this dialogue was started. Awareness is important, one of the only things we can do to help our little miracles, and I do not think the person who began the discussion in anyway means to take away from that. But it is also the responsibility of those ‘in the know’ to bring awareness to individuals and groups who will use their ‘credibility’ for lack of a better word, against our children and belittle the work we do in our children’s names everyday for the betterment of themselves. NO ONE steals from my child, especially not a group I promoted and was devoted to- and I mean steal as in my child’s dignity as a survivor & the love and compassion I so wrongfully invested in their group.

    • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

      Hi me,
      Thank you for your comments. Of all the things I said we did to help do our part I don’t feel this was the blog to voice your feelings about an organization I mentioned in my blog.
      I do feel that you and a few above, should voice your opinions and concerns somewhere, just not on a “happy blog”. We are all battling something very bad and welcome ways to help us. This was to offer help and encouragement not point out any problems.
      I don’t think anybody reading this, with out knowing all the other opinions, would have focused on the mention of the organization but all the ways they can help get the word out.
      Please start a blog and slander any company you want but please keep this personal blog as intended, to help.
      Happy Heart Month!!

  8. Save Babies Through Newborn Screening Foundation says:

    Just wanted to applaud your efforts in helping to raise awareness for congenital heart disease and newborn screening.

  9. Marie Broussard says:

    So very fitting that the week of Valentines Day has been proclaimed as CHD awareness! thank you for your passion…from another HLHS family (21years)!

    • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

      Thank you Marie, 21 years is awesome!!!

    • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

      If you will be there Saturday downtown Houston at the KTB Walk my son would love to meet your 21 year old….if possible.

      • Marie Broussard says:

        So sorry we were out of town and did not know about the walk. I am sure Paul would enjoy meeting a fellow HPLH patient. You can friend me on FB or contact me through TCH. I have always given them permission to give our contact information to other heart families.

  10. Uwe says:

    Hi Rick:

    I don’ t know if you remember, but I believe we met you, Misty, and Daniel in Austin when both our HLHS kids were little. Eric, my son, developed PLE in 2007 — that wasn’t his first bout, but it had always resolved before. While we managed to control it with diuretics (and later budesonide) for a few years, he was finally listed for a heart at Texas Children’s Hospital in October, 2011 and received the gift of a heart last summer. Thanks to the skills of the surgeon, and the post-op care from the terrific doctors and nurses, he was in the hospital for just 10 days after transplant and resumed college a few weeks ago. We’re all so incredibly fortunate to have an institution like TCH in Texas.

    We also request and receive a proclamation from the State of Texas and the City of Austin every year. It’s fantastic to see how successful these CHD Awareness week campaigns have become over the last few years. My hat’s off to you for your efforts.

    Best wishes to you and your family!

    • Maria Avelar says:

      Hi,
      My son also has HLHS. He is an 11 yr old energetic boy. He is doing so great at the moment. How old is your son? My e-mail is familiaavelar@windstream.net

      • Uwe says:

        Hi Maria: I can’t believe I didn’t mention that. He will be 21 in May. :-)

        • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

          Yes I remember you Uwe! I am sorry to hear about needing the transplant and I am very excited to hear he is doing good now. We have fought away PLE over 4 times and have helped them try different techniques that has worked for him over the years. We will keep fighting always until we come up with a cure not a band-aid. It was great hearing from you!

      • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

        Hi Maria, my son is 17. He is doing great at the moment also. He is small for his age but HUGE at heart! :-)

  11. Me too says:

    Thanks Rick, Emily. As another father of a patient, I have seen, personally, what It’s My Heart has contributed to the cause. They have helped me and others. I won’t pretend to know the details of their paperwork but I don’t believe – for a second – that they don’t care. They are heart parents like me. If there are issues it’s because they are heart parents. Not a well oiled corporate business-major machine. At least I’m assuming. Grow up, Jayne, Michael, Samantha, “Anonymous”. If, in fact, you are actually more than one real person trying to slander a group that’s doing real help in this world. Even if not perfect help. It is not our role to judge. I find myself curious how you could be the first to repond with such bitterness. Others are too busy fighting the ‘good fight’. Others are too busy trying to help. I hope someday, if you truly believe your own words, you start or own organization and post its link here so we know you also care enough to try. This weekend I saw people take there kids out in the rain to raise awareness. I saw the same people you criticized with their families in the mud trying to help. Shame on you. Happy heart awareness month.

    • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

      Thanks Me Too!
      I was there with 13 family members and friends volunteering in the rain to help make others aware! Our son is 17, honestly most people needing this support are not his age. We volunteered and help other parents because we know the struggles that a heart warrior goes through to try and help with advice and techniques to deal with it. I could careless what any heart organization does with their contributions as long as people are more aware and educated going in to battle. There are government laws and officials that are in charge of the financial help of those needing it. How could any of you say they only helped you until you found out where their money went???

  12. Carissa says:

    Hi Rick and Uwe,
    I found this thread when searching for PLE treatments.

    My daughter is nine and is fighting her first recurrence of PLE.

    I wanted to ask you if you have any advice or if you can email me and let me know what treatment options you’ve used and how they’ve worked out for you.

    Thanks for any advice you can offer!

    • Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

      Hi Carissa,

      I would be happy to discuss anything we know and have learned about PLE over the last 17 years. I am sorry to hear that your family and daughter is going through that now. My cell # is 713-392-2433 and my email is rickw@fittcom.com

      I look forward to talking to you.

      Rick Westfall

  13. Lauryn says:

    Yayyy for heart awareness week/month!~ Thank you to all the families who have helped put out awareness and GOD bless all of our heart warriors young and old!~ Im always hearing about all theese efforts to raise awareness elsewhere but nothing specifically in ABQ NM, id like to help or start or just do something, anything in general to spread the word and get it out there, If anyone knows of anything please let me know!~ laurynduberry@aol.com. I really enjoyed this blog, how amazing!~ Congratulations on your accomplishments!! Always praying <33

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    I’m hoping to start my own site soon but I’m a little lost on everything.
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  15. Velicia Ott says:

    http://www.gofundme.com/91te8s please take a moment and read Kaiden’s story. he is my 5 month old with HLHS. His prayer page is also on this page also. God bless u

  16. Velicia Ott says:

    http://www.gofundme.com/91te8s please take a moment please and read mine and Kaiden’s story. He is my 5 Month old born with HLHS. a link to his prayer page is also on this page. God bless u.

  17. Deja Dobbins says:

    THANK YOU SO MUCH FOR BRINGING AWARENESS TO THIS CONDITION!!! PLEASE CONTINUE TO THE FIGHT!!!!!!
    http://www.gofundme.com/AHomegoingForNevaeh

  18. Jayne says:

    Rick,
    I am sorry you feel embarrassment – but this information is ESPECIALLY helpful to new CHD warriors bc that is precisely whom she feeds upon. I am saddened to know of how many of us are out there burned from the actions of 1 incredibly awful person who seems to prey upon us in a most vulnerable time in our lives. It just kills me to think of those she is using, much like yourself, when truly she could care less about you, but rather what you CAN do for her. She has deflated many of us apparently – who haven’t done much if anything since after once being so on fire for the cause – a cause dear to us too. It’s hard to not want to see good people such as yourself associated with or promoting such an evil person’s agenda. I wish she appreciated you, truly I do – but the truth of the matter is – she doesn’t care about anyone but herself. Hopefully you will instead view this as a well intentioned caution of who you associate with and promote – I mean it has been a year since all the chapters folded and Board members left – I guess just seeing wht you wrote prompted me to be silent no more & sound the warning bell. We deserve better – Our children deserve much better.

  19. Rick Westfall, Father of Patient Rick Westfall, Father of Patient says:

    Jayne,
    I am sorry that my words prompted you to finally be able to vent after one year. If you have so much passion and anger then you should write your own blog.

    There is not one person who has emailed me for support, help or advice that has mentioned or asked if “It’s My Heart” is help for them. I am a CHD Advocate, I have blasted awareness on every CHD “wall” on Facebook, news stations, media at every major hospital, high schools, Mayor’s office and even the Governor. The fact that you and others keep talking about it is even MORE awareness in our personal mission! People need positive awareness not name calling and finger pointing.

    We have been battling for 17 years with HLHS and Protein Losing Enteropathy and I wish every day that any organizations, blogs, walls, etc would have been available for us to see hope in the future when Daniel was born. I am not doing this for us, money or anything other then the feeling we get when a parent calls, emails us or sees Daniel at a “Heart” function.

    Again, this blog is to help people and promote only one thing… CHD Awareness. Thank you for sharing your opinions about this blog. Please go online today and everywhere you go and have the same passion and spread the word for the last day of CHD Awareness Week and Happy Valentine’s Day!

  20. Me too says:

    I probably shouldn’t write this. And pretend to put words in Rick’s mouth. But Jayne,. I don’t think he feels embarrassment because of you. I think he feels it for you. Just because some people leave doesn’t mean they shouldn’t. I am a heart dad. I am not qualified to run a chapter. I assume neither are others who felt differently. We have our own issues to deal with, not everyone elses. It’s My Heart does great things for some of us. And our kids. Let others decide, objectively, for themselves. You have the right to your opinion. As I do mine. But reading through these posts, others have agendas beyond helping parents who need help. I’m sorry you are still hurting.

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