Heart Defect
- Thread starter lyn02
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fagosflasy
New member
@fagosflasy Thank you very much
@lyn02 With our last, our 20 week scan resulted in a diagnosis of tetralogy of fallot. Cue 5 weeks of emotional rollercoaster as we waited for an appointment with the cardiologist to talk next steps.
My advice is unsatisfying: wait to talk to the cardiologist before heading into the emotional abyss. Easier said than done, but I wish I had that advice back then.
Our cardiologist went through all the evidence, downgraded the diagnosis and worked with us on a plan.
I know your diagnosis is different, but you’re only a few days away from speaking to someone with the experience to guide your next steps.
You’re going to get through this.
My advice is unsatisfying: wait to talk to the cardiologist before heading into the emotional abyss. Easier said than done, but I wish I had that advice back then.
Our cardiologist went through all the evidence, downgraded the diagnosis and worked with us on a plan.
I know your diagnosis is different, but you’re only a few days away from speaking to someone with the experience to guide your next steps.
You’re going to get through this.
@maineiac Firstly, I’m sorry you had to go through all of that. Secondly, I can’t tell you enough how much your message means to us. We had to stop googling because there’s just too much out there so it’s doing more harm than good, definitely looking forward to hearing what the experts say Wednesday. We’ve had a few messages very similar to this and it gives us hope. Again, thank SO much for your message.
ihadavision
New member
@ihadavision Thank you!
katrina2017
New member
@ihadavision I think you mean r/tfmr_support 
marjmorris
New member
@katrina2017 Here's a sneak peek of /r/tfmr_support using the top posts of all time!
#1: A note about user harassment.
#2: I don’t have words about what SCOTUS just did. I’m just numb.
#3: I know we made the right choice
[sup][sup]I'm[/sup][/sup] [sup][sup]a[/sup][/sup] [sup][sup]bot,[/sup][/sup] [sup][sup]beep[/sup][/sup] [sup][sup]boop[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Downvote[/sup][/sup] [sup][sup]to[/sup][/sup] [sup][sup]remove[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Contact[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Info[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Opt-out[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]GitHub[/sup][/sup]
#1: A note about user harassment.
#2: I don’t have words about what SCOTUS just did. I’m just numb.
#3: I know we made the right choice
[sup][sup]I'm[/sup][/sup] [sup][sup]a[/sup][/sup] [sup][sup]bot,[/sup][/sup] [sup][sup]beep[/sup][/sup] [sup][sup]boop[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Downvote[/sup][/sup] [sup][sup]to[/sup][/sup] [sup][sup]remove[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Contact[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Info[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]Opt-out[/sup][/sup] [sup][sup]|[/sup][/sup] [sup][sup]GitHub[/sup][/sup]
ihadavision
New member
@katrina2017 I was so focused on the underscore that I mixed up the letters
@ihadavision I have been poking around in this sub and am already feeling like it has been helpful. I feel far less alone. Thank you for suggesting it, I didn't even know this existed. -OP's wife
ihadavision
New member
@nicknicks Hugs to you both through this terrible circumstance.
73137_hawk
New member
@73137_hawk That means a lot. Thank you!
borisbekah
New member
@lyn02 Brother I feel your pain.
My wife and I went through a similar issue.
Non-life threatening defect/s but would have had serious life-altering and quality of life impacts. And again, similarly while genetic testing found no further underlying issues, the combination of defects was too rare to not consider there would not be further underlying issues.
Our meeting with the Genetic Counsellor and Genealogist was a tough one. The Genealogist was very blunt, numbers and statistics focussed which did not do us any favours. The Counsellor was much more personable and helped to explain things in layman’s term. They provided us a Cole’s notes of things for us to research ourselves.
We chose to terminate at 24weeks, and just so you are as prepared as possible, it will be the hardest few days of your life as the dad and even tougher for mum. I hated the first funeral I had to plan was for our unborn child (we just had a cremation and did not do a full procession) but it helped bring me closure, my wife understandably did not want to have to make the arrangements.
We do not regret this decision one bit, but it’s still incredibly a tough process to go through which can take months or more to come to terms with.
Again, nothing can really prepare you for this should you go down this route BUT the biggest consideration in our decision was what is the unknown risks as it seems to be such a rare condition/combination and how is this going to affect not only their quality of life, but ours too (not only mentally, but financially etc) A life where you spend more time at a hospital that at home was not something we were prepared for.
We know parents of children with minor disabilities and we’ve seen the toll it takes on them. Not to their discredit at all, but they have an enormous amount of strength and will power.
It was our first which made the decision easier to an extent. Many families would say if it were to be for a second or third, they would not have chosen to terminate as they know the full extent of love and happiness that a child can bring, but for us it was our first, and beyond surreal it was even happening.
Our due date was the end of July and that again was a tough couple of days.
Another user suggested r/TFMR_support
Please read through some of their stories and similar groups as well. They were incredibly supportive and helpful for my wife to find closure.
I apologise that this comes across so negatively, but I couldn’t not stress the difficulty in the ‘other side of the coin’
My wife and I went through a similar issue.
Non-life threatening defect/s but would have had serious life-altering and quality of life impacts. And again, similarly while genetic testing found no further underlying issues, the combination of defects was too rare to not consider there would not be further underlying issues.
Our meeting with the Genetic Counsellor and Genealogist was a tough one. The Genealogist was very blunt, numbers and statistics focussed which did not do us any favours. The Counsellor was much more personable and helped to explain things in layman’s term. They provided us a Cole’s notes of things for us to research ourselves.
We chose to terminate at 24weeks, and just so you are as prepared as possible, it will be the hardest few days of your life as the dad and even tougher for mum. I hated the first funeral I had to plan was for our unborn child (we just had a cremation and did not do a full procession) but it helped bring me closure, my wife understandably did not want to have to make the arrangements.
We do not regret this decision one bit, but it’s still incredibly a tough process to go through which can take months or more to come to terms with.
Again, nothing can really prepare you for this should you go down this route BUT the biggest consideration in our decision was what is the unknown risks as it seems to be such a rare condition/combination and how is this going to affect not only their quality of life, but ours too (not only mentally, but financially etc) A life where you spend more time at a hospital that at home was not something we were prepared for.
We know parents of children with minor disabilities and we’ve seen the toll it takes on them. Not to their discredit at all, but they have an enormous amount of strength and will power.
It was our first which made the decision easier to an extent. Many families would say if it were to be for a second or third, they would not have chosen to terminate as they know the full extent of love and happiness that a child can bring, but for us it was our first, and beyond surreal it was even happening.
Our due date was the end of July and that again was a tough couple of days.
Another user suggested r/TFMR_support
Please read through some of their stories and similar groups as well. They were incredibly supportive and helpful for my wife to find closure.
I apologise that this comes across so negatively, but I couldn’t not stress the difficulty in the ‘other side of the coin’
@borisbekah Do not apologize at all, I very much appreciate the information. This is exactly what we’re looking for. I am very sorry for what you had to go through. Thank you for reaching out!
@borisbekah I am so sorry you had to go through this. I am so thankful you shared your story with us-this truly means so much. I keep thinking about her due date, and all the emotions that will surround that time should we have to make this decision. I am happy to hear you were able to find closure, although I am sure grief is something that still comes an goes, but eases up with time. We are wishing you and your wife all the absolute best and happiness. Again, thank you. -OP's wife.
jesusrocksjoseph
New member
@lyn02 Not much to add, except to share our story, as I feel that a few weeks ago, we were where you are now - a thousand thoughts and emotions going through the mind, feeling helpless and like there's nothing else to do than simply wait. Our maternal fetal medicine doc broke the news of a potential rare and major heart defect (truncus arteriosus) and enlarged brain ventricles at the 17-week scan. To add to all that, they also found that the baby's cord blood vessels are exposed, increasing his bleeding risk. This all led to an amniocentesis a week later and a fetal echocardiogram with a pediatric cardiologist a week after that. The cardiologist confirmed it's a major heart defect, albeit a less rare one (tetralogy of Fallot), but there's a chance it could be another similar defect and they can't be sure yet, since baby's heart is so small and hard to visualize. Either way, the little guy will need open heart surgery after he's born. Over the past few weeks, we have had multiple scans and echos, several doctor's appointments, and agonizing waits in between the results. We're at 24w+ now and the good news is all the genetic tests, chromosomal anomalies etc. were all negative. We're taking it one day at a time, doing all we can and hoping for the best. Keeping you in our thoughts, fellow predad, and wishing you the best, in your decision and journey.
@jesusrocksjoseph Thank you so much for the reply, waiting for the cardiologist appointment tomorrow and the amniocentesis results is absolutely agonizing. So sorry to hear what you’re going through as well. I wouldn’t wish this on anyone, and people’s support like this has been absolutely amazing so far. Good luck with everything!!
joeweatherly
New member
@lyn02 Wishing you and your wife the best.
I can’t speak to heterotaxy, but I can speak a bit on Congenital Heart Defects. My daughter was born with a coarctation which was repaired at a few weeks old, and shortly after was diagnosed Shones Complex which is also a rare congenital heart disease. Multiple heart surgeries, and a full replacement of her mitral valve later and she’s doing great at 18 months old.
The process was hard and overwhelming but one thing that was truly amazing was the CHD community. My wife and I have made many life long friends along the way. There are numerous groups and all the parents I’ve met who have a child with a CHD are so supportive. We’re all one big family. Whether you’ve lost a child to CHD, or still have your heart warrior fighting, know there is a tremendous amount of support, and many others going through similar situations. I don’t have all the answers and ever child’s situation is unique to them, but feel free to reach out if you have questions.
I can’t speak to heterotaxy, but I can speak a bit on Congenital Heart Defects. My daughter was born with a coarctation which was repaired at a few weeks old, and shortly after was diagnosed Shones Complex which is also a rare congenital heart disease. Multiple heart surgeries, and a full replacement of her mitral valve later and she’s doing great at 18 months old.
The process was hard and overwhelming but one thing that was truly amazing was the CHD community. My wife and I have made many life long friends along the way. There are numerous groups and all the parents I’ve met who have a child with a CHD are so supportive. We’re all one big family. Whether you’ve lost a child to CHD, or still have your heart warrior fighting, know there is a tremendous amount of support, and many others going through similar situations. I don’t have all the answers and ever child’s situation is unique to them, but feel free to reach out if you have questions.