Mended Little Hearts Open Forum

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Welcome and Introduce Yourself

  • 1.  Welcome and Introduce Yourself

    Posted 03-14-2017 11:45
    Hi!
    We are so excited to be launching our online communities! This space is for all Mended Little Hearts families and patients. Please feel free to introduce yourself and get the conversation started. 

    I am Andrea Baer and I am the Director of Patient Advocacy here at Mended Hearts and Mended Little Hearts. I am also the community manager here at Connections in a Heartbeat as well as the parent to a child who was born with a CHD. Trenton turns 8 on St. Patrick's Day. I founded MLH of Southwestern, PA, served as the National Growth and Development National Chair, and then the Vice President of MLH on the Executive Committee of the Mended Hearts Board of Directors. 

    Looking forward to get to know everyone!

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 2.  RE: Welcome and Introduce Yourself

    Posted 03-14-2017 16:17
    Hi!  My name is Shannan Pearsall and I am the Group Coordinator for MLH of Long Island!  I am a heart mom to Aidan (8 years old with HLHS). I am also the MLH National Social Media Chair!

    You can reach me at socialmedia@mendedlittlehearts.org or shannanpearsall@gmail.com


    ~Shannan

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    Shannan Pearsall
    Lynbrook NY
    (516) 812-5148
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  • 3.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 14:19
    Hello! I am a CHD Survivor with Tetralogy of Fallot. I also am the Co-coordinator for the Central Virginia Group and can be reached at help4littlehearts@yahoo.com.


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    Lauren Gray
    North Chesterfield VA
    804-928-5629
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  • 4.  RE: Welcome and Introduce Yourself

    Posted 03-14-2017 22:02
    Hello! 
    My name is Nicole Sanchez, I am the RD for Mended Little Hearts in the Western region. I am also a coordinator for MLH of the Bay Area (San Francisco). I am an adult with a CHD, born with tricuspid atresia/HRHS. I'm excited for this new way of connecting to fellow CHD families! :) 

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    Nicole Sanchez
    Alamo CA
    (925) 487-8132
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  • 5.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 07:00
    Hello my name is Julie Goss from Indio, CA. My son Kayden had a heart transplant at 8 months old due to dilated cardiomyopathy.

    ❤JuLiE A. GoSs❤





  • 6.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 08:09
    Hi, my name is Elizabeth and my third (of four) sons is a heart baby. I was introduced to Mended Little Hearts shortly before he was discharged after is first OHS in 2013.





  • 7.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 09:17
    Hi all, I am a member in SW Ohio but we actually travel to Columbus, OH for all of my daughter's procedures. She was diagnosed with Hypoplastic Right Heart Syndrome at around 26 weeks, so we were expecting a lot of what was coming after her birth. She had a ballooning at a few weeks old to open her pulmonary valve. We spent the first month in the hospital. She had her first OHS at 7 months, in which they performed the Glenn procedure and gave her an artificial conduit. Since then, she has had 2 sessions in the Cath lab to balloon the artificial conduit back open as it had narrowed. She will need a new conduit in the next couple of years. The outlook is good so far though that she won't have to get the Fontan and can stay and 1.5 chamber kiddo. 

    ------------------------------
    Carolyn Stock
    MLH member
    ------------------------------



  • 8.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 10:00
    Hello all. I am a 29 year old Aortic Stenosis survivor. I still find it incredibly odd to call myself a survivor, and am still so shocked how large of a group of people are affected by CHD either as patients or as family. With that in mind I was approached a little over a year ago to take part in an inspirational documentary following the life cycle of people with CHD. This past Monday was the world premier of "The Heart Within". Please feel free to follow the link below, and I hope you enjoy. A portion of the proceeds go towards Cincinnati Children's Hospital.

    https://vimeo.com/ondemand/theheartwithin/207935706

    Best,

    Stephen Reynolds

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    Stephen Reynolds
    Villa Hills KY
    (859) 750-5632
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  • 9.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 14:39
    Hi!  I'm Erin.  My daughter Raygen, who will be 6 on the 23rd!!!, was born with HLHS.  She has had all 3 stage surgeries and is doing awesome heart wise.  She is non verbal and only eats from a g-tube, but she is very social and so smart.  

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    Erin Due
    Onalaska, WA

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  • 10.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 15:11
    Hi, my name is Candida Schendel.  I am the Mended Little Heart Regional Director for the Southwest region.  I have been a part of MLH since 2007.  My son is 11 years old and has HRHS and a long history of SVT and arrhythmia.  He has had all 3 stages of surgery and currently is on medication to control the arrhythmia.  

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    Candida Schendel
    Montgomery TX
    (210) 213-6140
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  • 11.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 15:53
    Hi there!

    My name's Annie and in 2010 our daughter, Gracie Garman, was born with HRHS.  Three open-heart surgeries later, she's doing AMAZING.  We're thankful for this journey because through it God has taught us so much about His faithfulness and care.  Just last year I published a book about Gracie's three open-heart surgeries ("Unexpected Grace: When Your Child Is Born With Half A Heart.")  I hope to get to know more of you and support you on your journey!

    Annie B. Garman
    anniebgarman.com

    ------------------------------
    Annie Garman
    Author
    Annie B Garman Publishing
    Triangle VA
    ------------------------------



  • 12.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 15:23
    Hi,
    My name Siobhan and I have a 12 year old son with with HLHS.
    He is a remarkable boy and is truly living and thriving despite his CHD. We have been very blessed. He is the oldest of 4 children. I have been involved with MLH for about 6 years and I would love to answer anyone's questions.
    Siobhan

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    Siobhan Pawelczyk
    Grand Island, NY.
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  • 13.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 16:15
    Hey there!  I'm Emily and I'm the Group Coordinator for Mended Little Hearts of Houston!  I've got a 12 year old heart healthy son and a 9 year old daughter with HRHS (Double Inlet Left Ventricle, L-TGA, VSD).  She has had 3 open heart surgeries and is doing pretty well since her Fontan in 2011!  There are always those hiccups though, and I cherish having the heart community around when I have questions or concerns.  It's great to have a sounding board of parents who know what struggles we all go through!  

    I look forward to virtually meeting all of you!  <3

    ------------------------------
    Emily Schaffhausen
    Missouri City TX
    (281) 382-5130
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  • 14.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 23:04
    Hello!  I'm Dara and my profession is an administrative assistant, but my passion is my son, 5 with HLHS.  He has had four surgeries - the normal three plus a bonus for sub-aortic tissue build up.  In addition to his heart, he has speech delays and some behavioral issues.  However, he can also be the absolute sweetest little boy, smart and funny. 

    I'm involved in our local chapter of Mended Little Hearts and it is a great outlet for me, knowing that I am helping others.

    I never imagined motherhood being like this, but I wouldn't trade it for the world.

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    Dara McBee
    Pasadena MD
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  • 15.  RE: Welcome and Introduce Yourself

    Posted 03-16-2017 08:12
    Hi my name is Carmen. My son Julian Santiago is 5 months he was born it with a large Vsd and asd he also has tracheomalacia and a gtube. We live in Philadelphia but we been in the hospital in Delaware for the 5 months.



    Sent from my T-Mobile 4G LTE Device





  • 16.  RE: Welcome and Introduce Yourself

    Posted 03-16-2017 17:03
    Hi!  My name is Kim. My son, Seth, is 14 years old and was born with TGA. He had the arterial switch when he was 8 days old. He has done remarkably well ever since. He is my pride and joy!!  I am the coordinator for the Mended Little Hearts of Oklahoma City group. We have been a part of MLH since early 2007 when I founded the OKC group. As well as being the mom to one awesome son and coordinator for the group, I also teach 7th grade Spanish and coach volleyball, basketball and track!!  I am a VERY busy (and often times tired) person!!  I look forward to getting to know a little more about everyone!

    My info is below of you ever need to reach me!!

    ------------------------------
    Kim Baratz
    Coordinator
    Mended Little Hearts of Oklahoma City
    Edmond, OK
    405-326-1528
    berly15@hotmail.com
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  • 17.  RE: Welcome and Introduce Yourself

    Posted 03-17-2017 18:32
    Hi. My son was diagnosed at my 20-week ultrasound with a CHD, which turned out to be Truncus Arteriosus.  He had surgery at 1 week old, and was home two weeks later.  He's now 2.5 years old and his next surgery is off sometime in the future. He's doing great. Our family lives in Oakland, CA and I have met a few of the other local heart families through the MLH chapter. I'm pretty freaked out and mad about what might happen to health care. I remember thinking how grateful I was that the ACA was in effect when he was born and I wasn't going to have to "worry" about things like insurance coverage for him...Happy to be connected to you all.

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    Aspen Baker
    Oakland CA
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  • 18.  RE: Welcome and Introduce Yourself

    Posted 03-18-2017 14:35
    Hello! 
    We have a 17 month old daughter who was diagnosed during pregnancy with TOF. She had surgery 4 months after birth, in Dec 2015. We live in southern Indiana and traveled to C.S. Mott's in Ann Arbor,MI for her birth and then again for her OHS. We'll return there for her future OHS as well. We also have an angel girl, who was prenatally diagnosed with HLHS, born a month early (in 2012) and lived for 4 days, at C.S.Motts. We also have two other children, both who have had echocardiogram done given we have had two children with CHDs, and they are heart healthy! 

    ------------------------------
    Angela Groninger
    CST/Instrument Tech
    Evansville, IN
    USA
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  • 19.  RE: Welcome and Introduce Yourself

    Posted 03-19-2017 14:52
    Hello! I'm Margaret King and I have an 8-year old son named Kieran who has HLHS. I'm glad this forum was started! I left facebook and have been missing heart community news! Cheers!





  • 20.  RE: Welcome and Introduce Yourself

    Posted 03-19-2017 15:00
    I seem to be having a hard time replying to specific threads/topics, and for some reason, unable to log in or register, but for Heartbeat Magazine topics, I'd like to see research and recommendations for liver issues after the Fontan.

    As for taking care of ourselves as heart parents, that's always a challenge. To be honest, I have heart friends and I have non-heart friends so I can "feel normal" sometime and get support and solidarity at other times. I've learned how to advocate for myself at home when I can, when it comes to breaks and rest/downtime. 










  • 21.  RE: Welcome and Introduce Yourself

    Posted 03-21-2017 13:31
    Hi,

    My name is Christine Fletcher and I am pregnant with our first baby.  Last week, at my 21 week ultrasound, we found out that she has two critical congenital heart defects.  We are hoping for a clearer diagnosis, but currently, we understand that she may have a single ventricle heart and pulmonary stenosis.  I am having a hard time finding information, resources or stories that are close to what our daughter's diagnosis is.  I am frustrated by the lack of information in books and in general around CCHD and CHD.  We have a follow up appointment with our fetal cardiologist next week to take another look and to further discuss our options.  Any help you may be able to give me would be much appreciated.

    Thanks,

    ------------------------------
    Christine Fletcher
    OAKLAND CA
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  • 22.  RE: Welcome and Introduce Yourself

    Posted 03-21-2017 13:57
    Hi Christine, 

    Welcome to the communities. I know how you feel in this initial diagnosis period and it is scary. I'm so glad you found us and hopefully Mended Little Hearts can help support you. 
    First...congratulations on your baby! It sounds like you are still trying to figure out what the CHD is exactly but we have a lot of members whose children have a single ventricle CHD and pulmonary stenosis. 
    I'm going to reach out to a few that I am good friends with and have them jump on to give you some more advice. My son is 8 and was born with a CHD and Down syndrome. He did have open heart surgery and I can relate to the fear and need for knowledge that we first felt after his diagnosis. 
    Let us know once you find out more information and we can point you to the education about the specific defect that is accurate and sound. 
    Have a great day!

    ------------------------------
    Andrea Baer
    Grapeville PA
    (724) 396-7820
    ------------------------------



  • 23.  RE: Welcome and Introduce Yourself