Mended Little Hearts Open Forum

Hi All,
I read so many stories here and sympathize with all of you. So much bravery and amazing inspiring stories out here. Last week I learned that my 10 yo daughter has a right coronary anomaly which needs to be corrected though heart surgery (unroofing procedure) to reduce her risk of sudden heart event. I am so stressed and terrified since that I'm finding it really hard to cope with the wait- another month. It's particularly hard as she doesn't know about it yet and the hospital nurse recommended not mentioning until a few days prior, maybe 3 days before coming to pre-op. She had some chest pain, that is how we even found out about it in the 1st place... 
I am absolutely panicked and stressed, having trouble sleeping, eating... even though I know that I should be thankful for having found out thanks to her symptoms. She would be at much higher risk had we never found out. 
 Does anyone here have experience with coronary unroofing? How do you tell a 10 yo she needs heart surgery? What can I possibly do for her not to panic? What will help her coping post-op??? Any advice you can share I would be so grateful, thank you all!  Jenn

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Jenn Z.
New York
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Hi Jennifer. I don't have a lot in common with your situation but I related to it. I had OHS and I didn't know I was sick. I didn't have a heart attack or stroke or symptoms that would have made me concerned. I related to your story because I remember having to tell my daughters (11 & 12 years old at the time) about needing surgery. It was very hard and emotional. Maybe you could research an online support group for kids that she can connect with. I don't know about not telling her a few days before the surgery. My personal opinion is that there is too much to prep for. My kids asked me so many questions. They researched my diagnose on their own. One of my girls did a paper about my heart condition for school. I'm sure your daughter is very smart and you know her best. But most of all remind her of how blessed she is that nothing terrible happened and you found out that way. You can tell her I said it's not as bad as it sounds. It's gonna suck in the hospital, but once she's home and mom is taking care of her recovery will go smoothly. You're going to know what to say.....you are her mom. God Bless!

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[Carrie] [Kashani]
Parapro
ISD
[White Bear Lake [MN]
Carrie
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Jennifer, I have a daughter with CHD. We have always been honest with her. You need to talk to her about it. It doesn’t have to be scary. Let her know you will answer all her questions. You will be surprised how well kids bounce back. My daughter is now 23. She had a new valve put in this past Christmas and she was only in the hospital 5 days. I know she is a little older now but since she was a baby we have always talked about her heart and made check ups fun. She by the way is starting her 2nd year of med school this fall and wants to become a pediatric cardiologist. So mom take a few deep breaths I know it’s scary but that little one is stronger then you think. Prayers for you and your daughter.

Sent from my iPhone


Original Message:
Sent: 8/1/2020 2:08:00 AM
From: Carrie Kashani
Subject: RE: Coronary Unroofing Surgery Aug 28 for my 10 yo daughter

Hi Jennifer. I don't have a lot in common with your situation but I related to it. I had OHS and I didn't know I was sick. I didn't have a heart attack or stroke or symptoms that would have made me concerned. I related to your story because I remember having to tell my daughters (11 & 12 years old at the time) about needing surgery. It was very hard and emotional. Maybe you could research an online support group for kids that she can connect with. I don't know about not telling her a few days before the surgery. My personal opinion is that there is too much to prep for. My kids asked me so many questions. They researched my diagnose on their own. One of my girls did a paper about my heart condition for school. I'm sure your daughter is very smart and you know her best. But most of all remind her of how blessed she is that nothing terrible happened and you found out that way. You can tell her I said it's not as bad as it sounds. It's gonna suck in the hospital, but once she's home and mom is taking care of her recovery will go smoothly. You're going to know what to say.....you are her mom. God Bless!

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[Carrie] [Kashani]
Parapro
ISD
[White Bear Lake [MN]
Carrie
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Thanks so much for your encouraging words, there were extremely encouraging and comforting. I really appreciate your taking the time. 

I absolutely love your daughter's story, what a brave and determined girl, so proud of her and how she's handled her CHD, bravo! I will take you and her as example to follow and manage my stress. We need to approach this with calm and faith.  

Thank you again so very much for your kindness, wishing your daughter much success in pursuing her dreams and much health to all!

Warmly,
Jennifer

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Jennifer Zana
New York
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Original Message:
Sent: 08-02-2020 01:48
From: Jennifer Nixon
Subject: Coronary Unroofing Surgery Aug 28 for my 10 yo daughter

Jennifer, I have a daughter with CHD. We have always been honest with her. You need to talk to her about it. It doesn't have to be scary. Let her know you will answer all her questions. You will be surprised how well kids bounce back. My daughter is now 23. She had a new valve put in this past Christmas and she was only in the hospital 5 days. I know she is a little older now but since she was a baby we have always talked about her heart and made check ups fun. She by the way is starting her 2nd year of med school this fall and wants to become a pediatric cardiologist. So mom take a few deep breaths I know it's scary but that little one is stronger then you think. Prayers for you and your daughter.

Sent from my iPhone



Original Message:
Sent: 8/1/2020 2:08:00 AM
From: Carrie Kashani
Subject: RE: Coronary Unroofing Surgery Aug 28 for my 10 yo daughter

Hi Jennifer. I don't have a lot in common with your situation but I related to it. I had OHS and I didn't know I was sick. I didn't have a heart attack or stroke or symptoms that would have made me concerned. I related to your story because I remember having to tell my daughters (11 & 12 years old at the time) about needing surgery. It was very hard and emotional. Maybe you could research an online support group for kids that she can connect with. I don't know about not telling her a few days before the surgery. My personal opinion is that there is too much to prep for. My kids asked me so many questions. They researched my diagnose on their own. One of my girls did a paper about my heart condition for school. I'm sure your daughter is very smart and you know her best. But most of all remind her of how blessed she is that nothing terrible happened and you found out that way. You can tell her I said it's not as bad as it sounds. It's gonna suck in the hospital, but once she's home and mom is taking care of her recovery will go smoothly. You're going to know what to say.....you are her mom. God Bless!

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[Carrie] [Kashani]
Parapro
ISD
[White Bear Lake [MN]
Carrie
------------------------------

I wanted to circle back and let everyone know that my daughter's surgery went very well and smooth.  Aug 28 feels like a long time ago, it's hard to believe this little girl had heart surgery. She is moving around and about with her life happily as if nothing had happened. Of course her movements are quite limited and she's anxious to get back to her real self which includes lots of physical activity, running and playing soccer with her travel team, but all things considered she is doing really well. I feel fortunate and privileged to have such an excellent team of doctors, anesthesiologist and nurses at Weill Cornell to make it such a smooth experience, relatively speaking.  
We ended up speaking with her about the surgery 1 week prior, which isn't so much time, but turns out to be plenty for a 10 year old. She was angry and scared at first, but we were able to answer all her questions on day 1 then she had a couple more questions over the next 2-3 days which we answered as well. The fact that my husband had several surgeries and her 12 year old brother had surgery helped answer her questions about anesthesia and waking up. The team at the hospital was extremely supportive, especially the child life support team, Allison was simply amazing. She really managed to understand where my daughter was at and provide her just the amount of information she needed to make her feel comfortable. It is way easier to be on the other side now, but I would want to tell parents above all to make sure you find a surgeon and a team your really trust and trust them. And all will turn out fine. Thanks for the support on this thread! Best, Jennifer

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Jennifer Zana
New York
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