I'm so sorry you're going through this. I don't have any experience, but based on the stories PPs have shared it sounds like there are lots of positive outcomes. Sending hugs and hope.
Sending lots of prayers your way. It's amazing all the medical technology and resources that are out there today. I've worked in pediatric cardiac icu and nicu. I know it's hard to not thing of all the bad things, but keep your head up.
Sorry you are going through this stressful time. I have a few people in my life with holes in their hearts.
My mother was born with a hole and had 2 surgeries as a child to patch the hole. After the second surgery she was able to live a fairly normal life (she was SUPER skinny and probably a few inches shorter than she would have otherwise been). She does have a huge scar going down her chest though. When my mom was older she had some complications with a heart flutter (not related to the initial defect). She had to have another surgery a few years ago and during the recent surgery the doctors said one of her original surgeries stitched her incorrectly and that caused the stress to the valve. She would be a lot better off if she ate better and exercised more.
My uncle (an aunt's husband) was also born with a hole which was fixed with surgery when he was either a baby or child. I'm not sure if he's hole was in a different location or if the technology in the few years difference in their ages made the difference, but his surgery was done through an incision on his back near his shoulder. So no big ugly scar. He is in great shape for a man in his 40s. He is noticeably shorter than his brothers and sisters - and my cousins all have his family's height.
My husband's cousin is 3 years old. She was born with a hole and also had the surgery done through her back near her shoulder. If I didn't know she was sick when she was born I would never have guessed it when I met her a few months after her surgery. She is an exhausting child- with no signs of anything being wrong with her. Her scar is only noticeable when pointed out. She does see a cardiologist once a year, but it seems to be mostly a yearly check up and no other procedures have been required.
Lastly, my cousin was a NICU cardiology nurse for a few years. She said that patients typically come back for yearly appointments until they are 21. Having all these people in my life, I have always thought of heart defects to be pretty common and so the medical profession can usually fix the probably. Try not to panic too much (I know it's easier said than done)- the cardiologist will be able to give you an much better idea of what the exact issue is and how they will be able to proceed with treatment. Good luck at your appointment!
Sorry to hear about this - that's hard news to go through! But like some of the PPs have said, medical knowledge and technology has come a long way. My SIL was born with holes in her heart as well, but they repaired it soon after birth and she thrived and has had no complications. This was back in the early 80s! She's an incredibly intelligent and successful woman now, and this early obstacle has never hindered her.
That said, this is still an emotionally trying event and lots of positive thoughts to you!
I am so sorry you and your family are going through this. Heart defects are common before birth so this is routine for the cardiologists and neonatologists. I used to work with some amazing neonatologists and while it is never easy for the families, the neos know their stuff. A previous poster mentioned bringing someone who might be able to be a second set of ears for anything you might miss at the appointment and I completely agree. You'll also need all the support you can get that day no matter what answers they give you. Sending positive vibes your way and wishing all the best for baby!
Thinking of you and what you're going through. My Dad received a heart transplant 2 years ago. for the previous 10 years he was kept alive by his team of amazing cardiologists, echo Drs and OSU Ross Heart Hospital nurses. Medical advancements with the heart have come SO far. Trust your doctors and put faith in them to steer you and yours the right direction. Prayers and positive vibes to you. And cry all you want! It's perfectly natural!
sending hugs your way. nothing is more nerve wracking than being powerless to help your little one - but you are surrounded by a community (albeit online) that is totally there for you! Like so many have stated before me - medicine is amazing these days - you're all going to be just fine. We're here if you need to cry/vent/whatever.
A close friend found out her baby had a very rare heart defect and would need multiple surgeries and likely would not live very long. They were devastated, too. Because medicine is so amazing these days, she did have her surgeries, and doctors are now saying she'll live a long life. She will need more surgeries as she grows, but they've been going very well!
So we ended up getting an earlier appointment for the Echo yesterday and the baby has a big hole in his heart. It's called CAVC. It will require surgery after birth. Of course we were in for another shock: the doctor told us that due to this type of a heart defect, the baby's chances of having down syndrome just went up from 1:10,000 to 1:2. We have scheduled an amnio for tomorrow and I am scared now, as there is a risk of miscarriage that comes with the procedure. Trying to think positive thoughts.
@NinaLCC Keeping my FX for you tomorrow. I can't imagine your anxiety level today, but know we are here for you if you need us. You're still in my thoughts!
@NinaLCC thinking of you and sending you positive thoughts for tomorrow's Amnio and any future appointments. I can't imagine how hard this week must be for you. We are here for you.
I don't know who all has said what, but just to call your nerves, I was born with a hole in my heart.
I I had a balloon procedure when I was 6 months and again at 18 months.
Obviously im good now. The hole closed eventually and I was very active in sports. I still have a slight arrhythmia but over than that it's pretty good.
Sending you good energy and thoughts for your procedure today. I cannot imagine how you must be feeling but know there is support for you here if we can be of any help.
Re: Heart defect
My mother was born with a hole and had 2 surgeries as a child to patch the hole. After the second surgery she was able to live a fairly normal life (she was SUPER skinny and probably a few inches shorter than she would have otherwise been). She does have a huge scar going down her chest though. When my mom was older she had some complications with a heart flutter (not related to the initial defect). She had to have another surgery a few years ago and during the recent surgery the doctors said one of her original surgeries stitched her incorrectly and that caused the stress to the valve. She would be a lot better off if she ate better and exercised more.
My uncle (an aunt's husband) was also born with a hole which was fixed with surgery when he was either a baby or child. I'm not sure if he's hole was in a different location or if the technology in the few years difference in their ages made the difference, but his surgery was done through an incision on his back near his shoulder. So no big ugly scar. He is in great shape for a man in his 40s. He is noticeably shorter than his brothers and sisters - and my cousins all have his family's height.
My husband's cousin is 3 years old. She was born with a hole and also had the surgery done through her back near her shoulder. If I didn't know she was sick when she was born I would never have guessed it when I met her a few months after her surgery. She is an exhausting child- with no signs of anything being wrong with her. Her scar is only noticeable when pointed out. She does see a cardiologist once a year, but it seems to be mostly a yearly check up and no other procedures have been required.
Lastly, my cousin was a NICU cardiology nurse for a few years. She said that patients typically come back for yearly appointments until they are 21. Having all these people in my life, I have always thought of heart defects to be pretty common and so the medical profession can usually fix the probably. Try not to panic too much (I know it's easier said than done)- the cardiologist will be able to give you an much better idea of what the exact issue is and how they will be able to proceed with treatment. Good luck at your appointment!
BFP#4- 9/26 edd 6/5/18
That said, this is still an emotionally trying event and lots of positive thoughts to you!
Married: 8/11/2007
DD: Born 2/3/17
BFP#2: 5/3, EDD 1/10/19
BFP1 12/24/14 - EDD 09/07/15 (D/C 8w1d)
BFP2 6/12/15 - EDD 2/22/16 (D/C 10w3d)
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Diagnoses and Treatments
PCOS (myo-inositol, excercize)
Indeterminant levels of APS IgM antibodies (baby aspirin)
Sub-septate uterus (hysteroscopic septoplasty 12/18/15)
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BFP3 05/02/16 EDD 01/09/17 DS born 01/05/17
BFP4 01/28/19 EDD 10/?/19 🤞🙏
Jan17 Sept Sig: Pumpkin Spice gone too far
Team Blue ~ Jan. 20
DS born 9/4/12
MMC July 2015
MMC January 2016
I I had a balloon procedure when I was 6 months and again at 18 months.
Obviously im good now. The hole closed eventually and I was very active in sports. I still have a slight arrhythmia but over than that it's pretty good.