My daughter was diagnosed with epstein anomally. It is a rare heart defect affecting her valvle. Her health is great. Her heart is dealling with the valve as is. But we see a cardioligist every 6 months. We hear the symptoms to look for. I would love to hear from other moms about this. I don't want to tell everyone because I want everyone to treat her as a normal kid. Any other moms have similar situation.
Thanks for all your E-mails. Its nice to know we are not alone in the world. Thank you for the support group info much appreciated.
H.
Hi! My brother has a rare heart condition had two open heart surgeries. The first one was at 9 months old and again at age 10. Well, he is 37 and has a pacemaker. More importantly, he is healthy and has two healthy sons. We treated him like he was normal. He could not play contact sports though so staff knew of his condition.
H. - my daughter is 2.5yo and also has a heart condition - called WPW which results in episodes of increased heartrate - can go upwards of 240 a min. She is a very healthy, active little girl and no one who sees her is aware of the condition. I do make sure to put the info on the forms for preschool and our church so that if something happened they would alert medics and know the medication she takes. As for telling people, I have told some people but we have never told my in-laws. At first we didn't know what the problem was and later it was to spare my overly anxious mil. Anyway my point is that you should make sure those caring for her regularly know about the condition and what to look for otherwise they could assume she is fine when something is happening and if she got hurt at daycare (if/when she goes) the emergency personal need the info. I have never found that my daughter was treated differently as a result - I think a lot of how you treat her will carry over.
Hi H.,
My son has a heart defect too, and although it's not the same one as your daughter I wanted to tell you about a support group in Sacramento. It is called Hearts of Hope and we have a blog: sacramentoheartsupportgroup.blogspot.com There is contact information on the page and you can definitely get in contact with a parent of a child with the same diagnosis. We also have meetings once a month if you're interested. I hope that helps some. You can also email me if you want to talk at a_himmelberger at hotmail dot com
I would like to offer my perspective as someone who was born with a heart defect (different from your daughter's though).
If your daughter's health is fine and she is allowed to "be a normal kid" then just treat her as normal and the rest will follow. That is what my parents did. We had yearly visits to the cardiologist and I was aware of my condition and thankfully I didn't not have any complications until I was an adult.
If there are symptoms that need to be looked for when she is playing or something like that, then other parents and teachers need to be aware so your daughter can receive appropriate care if necessary.
I had open heart surgery at 2, 12 and 36 so I grew up with a big scar down the middle of my chest, so basically everyone knew something happened, but I did not hide my scar and I was open with those who asked.
If you want to talk more off line, I'd be happy to.
My 3 year old has a similar heart condition and in perfect health. We hardly ever tell anyone other then caregivers about it. No reason for other people to know. Other then that we just try and watch him.
Just the other night we rushed him to the hospital in the middle of the night as he said his chest hurt. After 4 hours in the ER they said he had gas and all his test came back fine. Thank goodness but I was not going to chance getting his little heart checked out. Hope that helps.
Hello H.. When was your daughter diagnosed? My son has Transposition of the Great Arteries and had open heart surgery at 5 days old. He is now 11, has a mild aortic leak and a significant murmur still. Who is her cardiologist and where is she seen? I totally understand what it is like to want her to live a normal life. I really did not talk about it too much until he was school aged. I tell people all the time know about his heart defect. I want people to know because I want them to be aware and I don't want to shock anybody if something were to happen to him while he was in their care. I just explain that he can do things that other kids can except contact sports. He has been stable for all these years and his friends and the parents of his friends feel completely comfortable around him, including the staff at his school. Have you heard of Camp Taylor? They are a wonderful organization. My son goes to camp and this is his 5th year going. He started going at age 7 and he loves it. They have a family camp that the entire family can go and then they have a junior camp and teen camp. My son has learned so much from going to camp and how to feel comfortable with his specific heart condition. You can see their website at www.kidsheartcamp.org. I am co-coordinator of Mended Little Hearts over here in Fresno. How does your daughter do in school? Does she tolerate heat and physical activity well? Let me know if you ever have any questions. L.
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