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paulajahlers
@paulajahlers

Posts: 5
Joined: Jan 29, 2018

Looking for answers – granddaughter's heart

Posted by @paulajahlers, Mon, Jan 29 1:29pm

My daughter is almost a month away from delivering our Gran daughter. In December we found that the Baby only has 2 Ventricles instead of 4. They also recently found the Baby’s left side of her heart is smaller because of all the blood being bumped into her right. She has no rhythm that is steady in her heartbeat. I’m asking for advice or what to expect because the stress is really wearing heavy on my mind.
If you have anything at all to help me with my thought process please, please help me ?

REPLY

@paulajahlers

I am sorry to hear that your granddaughter has heart problems. What are the doctors anticipating for her after her birth? Will she be in NICU for a while?
Do they have any treatment plans in place for her after birth?

Teresa

I’m here begging for advice to help me understand or possibly to accept what possiblymight happen. I need encouragement to help me understand.
My daughter is due to have a Baby next month. We found in December that the baby only has 2ventricles leading to her heart. The 2 ventricles she does have are backwards. She was also just recently explained that the babies left side of her heart is smaller since all the blood is going to her right side. Can someone that has experienced problems like this please help me to understand what the possibilities are for her.?

@paulajahlers

I’m here begging for advice to help me understand or possibly to accept what possiblymight happen. I need encouragement to help me understand.
My daughter is due to have a Baby next month. We found in December that the baby only has 2ventricles leading to her heart. The 2 ventricles she does have are backwards. She was also just recently explained that the babies left side of her heart is smaller since all the blood is going to her right side. Can someone that has experienced problems like this please help me to understand what the possibilities are for her.?

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Praying for all.

@paulajahlers

We can all understand your concern for your granddaughter. It appears like they will know more about her condition and the next steps to take after she is born. You have my prayers and good wishes.

Teresa

Hello @paulajahlers,

I can only imagine worry and stress you call are undergoing! I’d like to extend a warm welcome to Connect and hope you find some reassurance in the fact that you’ve joined a wonderful, supportive community.

First, based upon the symptoms you are describing, I’d sincerely encourage you to read this information from Mayo Clinic; it details congenital heart defect, particularly Hypoplastic Left Heart Syndrome or HLHS:https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599

This Page on Connect, https://connect.mayoclinic.org/page/hlhs/ has some incredible information and inspiring, positive stories of Mayo Clinic patients and parents of children born with similar congenital heart disease or defect. Here are links to a few stories:
https://connect.mayoclinic.org/newsfeed-post/research-collaboration-gives-hope-for-future-of-babies-with-rare-heart-defect/
https://connect.mayoclinic.org/newsfeed-post/novel-stem-cell-treatment-means-new-lease-on-life-1/
https://connect.mayoclinic.org/newsfeed-post/mayo-researchers-use-stem-cells-to-try-and-heal-baby-lucas-heart-2cd273/

I’d like to introduce you to a few members who’ve written about various congenital heart problems. Please meet @neha4 @jhoffmanj @janicepike @wandikarnadi @ninimurphy @thiles @mehlisue @tkterrell @1949 @fayette @michelle39 @gitanjali @nancyirene @grward @kelovich @gcatalfamo @dorothyma3 @graceuk16 @katiehuston @joannenz @bellheartmom @goodgrief16 @sascha2432. I’m also tagging Mentor @cynaburst, who may have some thoughts that might help ease your worries.

@paulajahlers, you are already doing the best things – waiting, supporting your daughter, and praying – and I know that the Connect community will also join you. The world of medicine has advanced in leaps and bounds, and if your child/grandchild has a congenital heart defect today, the chances are better than ever that the problem can be overcome and that he/she may grow up to lead a normal life. Is this your daughter’s first baby? What precautions has she been advised to take before delivery?

@kanaazpereira

Hello @paulajahlers,

I can only imagine worry and stress you call are undergoing! I’d like to extend a warm welcome to Connect and hope you find some reassurance in the fact that you’ve joined a wonderful, supportive community.

First, based upon the symptoms you are describing, I’d sincerely encourage you to read this information from Mayo Clinic; it details congenital heart defect, particularly Hypoplastic Left Heart Syndrome or HLHS:https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599

This Page on Connect, https://connect.mayoclinic.org/page/hlhs/ has some incredible information and inspiring, positive stories of Mayo Clinic patients and parents of children born with similar congenital heart disease or defect. Here are links to a few stories:
https://connect.mayoclinic.org/newsfeed-post/research-collaboration-gives-hope-for-future-of-babies-with-rare-heart-defect/
https://connect.mayoclinic.org/newsfeed-post/novel-stem-cell-treatment-means-new-lease-on-life-1/
https://connect.mayoclinic.org/newsfeed-post/mayo-researchers-use-stem-cells-to-try-and-heal-baby-lucas-heart-2cd273/

I’d like to introduce you to a few members who’ve written about various congenital heart problems. Please meet @neha4 @jhoffmanj @janicepike @wandikarnadi @ninimurphy @thiles @mehlisue @tkterrell @1949 @fayette @michelle39 @gitanjali @nancyirene @grward @kelovich @gcatalfamo @dorothyma3 @graceuk16 @katiehuston @joannenz @bellheartmom @goodgrief16 @sascha2432. I’m also tagging Mentor @cynaburst, who may have some thoughts that might help ease your worries.

@paulajahlers, you are already doing the best things – waiting, supporting your daughter, and praying – and I know that the Connect community will also join you. The world of medicine has advanced in leaps and bounds, and if your child/grandchild has a congenital heart defect today, the chances are better than ever that the problem can be overcome and that he/she may grow up to lead a normal life. Is this your daughter’s first baby? What precautions has she been advised to take before delivery?

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This is actually my daughters 3 rd baby . I’m not sure exactly how this happened but when Our Daughter was just expecting she was working and contacted a Staff infection that they called Mrsa . We later found out in Dec about the heart and only having 2 ventricles rather then 4. The Doctors at the time transferred her to Specialist to start a plan .
The plan is to have her Deliver early and get the Bany over to the children’s hospital.
But I want to Yjsnk you for giving me hope that very possible. yet.

Three and a half years ago our beautiful grandson was born w HLHS. He is now a big brother and is progressing well. I can understand your angst and all the stress you are experiencing for not only the baby but daughter also. We will keep you and your family in our prayers.

@kanaazpereira

Hello @paulajahlers,

I can only imagine worry and stress you call are undergoing! I’d like to extend a warm welcome to Connect and hope you find some reassurance in the fact that you’ve joined a wonderful, supportive community.

First, based upon the symptoms you are describing, I’d sincerely encourage you to read this information from Mayo Clinic; it details congenital heart defect, particularly Hypoplastic Left Heart Syndrome or HLHS:https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599

This Page on Connect, https://connect.mayoclinic.org/page/hlhs/ has some incredible information and inspiring, positive stories of Mayo Clinic patients and parents of children born with similar congenital heart disease or defect. Here are links to a few stories:
https://connect.mayoclinic.org/newsfeed-post/research-collaboration-gives-hope-for-future-of-babies-with-rare-heart-defect/
https://connect.mayoclinic.org/newsfeed-post/novel-stem-cell-treatment-means-new-lease-on-life-1/
https://connect.mayoclinic.org/newsfeed-post/mayo-researchers-use-stem-cells-to-try-and-heal-baby-lucas-heart-2cd273/

I’d like to introduce you to a few members who’ve written about various congenital heart problems. Please meet @neha4 @jhoffmanj @janicepike @wandikarnadi @ninimurphy @thiles @mehlisue @tkterrell @1949 @fayette @michelle39 @gitanjali @nancyirene @grward @kelovich @gcatalfamo @dorothyma3 @graceuk16 @katiehuston @joannenz @bellheartmom @goodgrief16 @sascha2432. I’m also tagging Mentor @cynaburst, who may have some thoughts that might help ease your worries.

@paulajahlers, you are already doing the best things – waiting, supporting your daughter, and praying – and I know that the Connect community will also join you. The world of medicine has advanced in leaps and bounds, and if your child/grandchild has a congenital heart defect today, the chances are better than ever that the problem can be overcome and that he/she may grow up to lead a normal life. Is this your daughter’s first baby? What precautions has she been advised to take before delivery?

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Hello @paulajahlers

I have been thinking about you and hope that your daughter is doing well. Has a date been set when the baby will be delivered?

I hope that all goes well for your daughter and her baby. I look forward to hearing from you when you are able to write again.

Teresa

@mschock

Three and a half years ago our beautiful grandson was born w HLHS. He is now a big brother and is progressing well. I can understand your angst and all the stress you are experiencing for not only the baby but daughter also. We will keep you and your family in our prayers.

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Hello @mschock

I appreciate your encouraging words to @paulajahlers. It is very helpful to hear from others who have such a similar experience.

Teresa

Hi @paulajahlers and @mschock,

I’d like to invite you to join us today, Feb. 9 at 8:30 a.m. CT for a video Q&A with Dr. Angela Mattke, pediatrician, and Dr. Tim Nelson and Dr. Yasir Qureshi about hypoplastic left heart syndrome (HLHS). https://connect.mayoclinic.org/webinar/video-qa-about-hlhs/
Dr. Mattke, Dr. Nelson, and Dr. Qureshi will answer questions live. Post your questions before and during the event.
Simply click View & Reply in the email notification to see all the details and to sign-up. I hope you can join us.

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