can i have a private post please: I am 21 weeks pregnant and have just found out…
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can i have a private post please: I am 21 weeks pregnant and have just found out my baby as 4 serious heart defects, her lung artery is blocked her heart is positioned on the right not left, she as a big hole in the middle and her chambers are all opposite to were they should be. if my baby survives she will need 3 major heart operations, can any one give any insight to what kind of life my baby could have? doctors have give us the option of aborting the pregnancy but i dnt think we can do that unless my baby is gonna struggle all his life. feeling very helpless 🙁
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20weeks pregnant found out my baby has hypoplastic left heart syndrome, ASD, VSD, pulmonary artery stenosis & transposition of the great arteries.
1year in hospital (she came home just before her 1st birthday) more diagnoses of chronic lung disease, tracheomalasia, bronchomalasia, arrhythmias, hypermobility & autism.
She is the light of my life, nobody could bring me as much joy in my life time as she has in the 5years I have been blessed with her. nobody knows what the future holds but never give up. Always believe in yourself & your baby – if I had listened to consultants she wouldn’t have made it to a month old.
She’s 5 now.
You can do this mumma, it’ll be a bumpy ride and you will question yourself but always have faith in yourself but ultimately your gorgeous baby. ⭐️⭐️
Hey from my personal experience my daughter had left atrial isomerism where she had 2 lefts of the heart her chambers weren’t correct she had a hole in her heart (AVSD) and also bradycardia so slowheart rate….. all I can say is I never aborted her I was offered by the doctors on more than one occasion but I carried on very small chance of survival. The longer it went on she continued developing I got bigger but she never improved, I don’t regret my decision of continuing the pregnancy because the termination was to have an injection put in her heart and induced. I was induced for medical reasons for me and her as her heart was failing and she passed away an hour after birth…… It’s not easy to deal with but if you need to speak to anyone message me I went through 12 weeks knowing this outcome and it only happened in June last year when I gave birth. I can’t offer any advice apart from someone to talk to but the baby may not survive based on what you said it’s like what I experienced every pregnancy is different though but think long and hard but don’t be too hopeful because if you’ve been offered an abortion theirs a serious reason why. Ask to see a cardiologist specialist I was sent to Glasgow for this and they confirmed the outcome of survival will be a miracle I was prepared mentally as best I could and that’s all you can do it’s not easy not gonna lie but pm if you need to x
The prognosis for my little girl was grim. She has serious and rare issues with her heart and was advised to abort! However I knew I couldn’t give up on her, she’s almost 4 now and has had 2 big open heart surgeries (one at 5 days old, one at 3 months old) and has another one to go. She’s had several smaller keyhole surgeries, and honestly you can’t tell there’s anything wrong with her x
My son was born with his
heart on the right
flipped over
Blocked arteries
Leaky valve
3 big holes in the heart which can’t be closed
Heart murmur
Plumbing wrong
Bottoms two chambers back to front
He is 5 years old now runs around like u would not know had 2 open heart surgery 1 more to come that we know he is a happy child a bit behind on his global development and speech but other then that happy loving caring would not change him for the world I was offered a termination at 24weeks refused and glad I did he is so grave and look how far he has come if u need to talk feel free to private message me I know it’s scary and the unknown is scary but my attitude was I fighting to keep him alive inside of me and once he is born it was his choice and I tell u what chd children are fighters and u should be proud of ur little one
I’m 33 weeks pregnant and my baby only has half a working heart, it’s a horrible time and this pregnancy has been very stressful for my husband and me. We have been offered terminations but are continuing with the pregnancy and he will have his first surgery at 8 weeks old.
If you want you can message me x
This is my boy
He has hypoplastic left heart syndrome ( half a heart), left sided coronary abnormalities an at the moment pulmonary hypo tension.he’s on 6 meds 3 times a day
Spent 7 months in hospital
Had first surgery at 4days old with only 40% of making it.
He had more open heart surgery at 11days old
At 8 weeks old he had surgery thru his liver an had a cardiac arrest
Was then told no chance of home before next op
Months went by to wait for him to grow
In August he had a 17hour op an on ecmo ( machine beating his heart an working lungs for him) for 9 days an told to say goodbyes.
But my baby stayed <3
Few more months an he had a peg fitted t go home ( he'd never fed oral due ti been too tired)
Yes its hard
But u get thru it
These babies are so strong
He's a little behind in development
He sat unaided 4 days before his 1st bday on 14ty April
Apart from been small an not able ti crawl yet he's doing good
We are awaiting to see I'd more surgery can be done ( he needs it but too risky an wouldn't work yet due to lung pressures)
There's groups on here for heart parents. Patches is a good one
Good luck xxxx
My little boy was born with several heart defects in September, he had surgery at 8 weeks and since then has thrived. You would never know there’s anything wrong with him!
There’s plenty of support out there. I found great comfort from strangers who were in similar positions. Wishing you all the luck in the world xx
My daughter has pulmonary atresia hypoplastic right heart, only has half a heart, it has been hard will all the stays in hospital and her having to have surgery, but she is a thriving 15 month old, and just looking at her you would never know! I couldn’t be a prouder parent of how amazing my daughter is! Hope this helps xxx
I’m so sorry to hear this. My baby has 5 intracranial brain abnormalities as well as dandy walker syndrome and also 12 fingers and to be honest we was told he might not survive. We got offered to abort but not a chance in hell could I do that. He is now 8 weeks old and beat all the odds. Everyday is better and he is stronger. He is oxygen dependant and tube feeding but he is here. Sorry went off track but my point is, don’t give up. Please feel positive and look forward to meeting your beautiful baby. There is a lot they can do nowadays x
I’m so sorry to hear about your little baba.. I hope nothing but the best outcome regardless.
I have pulmonary Artery Stenosis, and a leaking valve. Born with 2 holes between main chambers. I was a baby when they did key hole surgery to balloon the arteries.
Immune was weak as a child so caught everything easily. However, did nothing to my childhood or adulthood and was lucky to have a very normal life.
I hope everything goes as well as it can for you and little one hun. From what I have read and seen myself, babies are a whole lot stronger than you’d think! Being positive helps and they can sense that too xx
Surely if you continue with your pregnancy & baby arrives, &has the necessary operations he may lead a happy life. I can imagine it will be hard. But so long as u have support around u then u can get through anything. Xx
I would say give your baby a chance things mite not be as serious when she’s born.things might be hard sometimes but I think it would be worth a chance.
Even if things are bad surely surgery would make things better.
Been honest I would continue with the pregnancy join heart groups, research everything.
Stay positive and strong xx
I will suggest you contact the charity little hearts matter they were fantastic when giving advice about my daughter . I presume they’ve done a detailed heart scan on baby ? Sadly heart problems can (only sometimes) be linked to genetic conditions have they offered you screening at all? I’ve been in your shoes in a similar way and my love comes your way because it’s scary as hell xx
I was born with Transposition of the Great Arteries. I’m 33 now and live a normal life. Every child is unique and will bring you so much joy…With or without a medical issue. Don’t give up…we’re known as heart warriors for a reason!😊 xx
My sister was 6months and they told her this she chose to abort because what’s the point in Britain ginger a baby into a world full of pain hospitals operation after operation as time passes and putting yourselves through heartache when it should be a happy time. You may chose to bring her into the world go through all the heartache operation and she may not make it anyway. It’s the hardest decision she ever made but in her heart she knew it was the right one for all involved. I’m so sorry your having to go through this I’m sure you’ll decide what you think is best for you regardless. Thinking of you hun. Sending you love and comfort as I know it’s hard and one of the hardest things you’ll go through x
So sorry to hear this – this is near exact way happened to my auntie and they decided with heavy hearts to end the pregnancy at 24 weeks 🙁 she was given bad odds tho n guided very much by Wat the doctors said n scans and 3rd opinions etc it wasn’t taken lightly n never is when doctors give u the choice for a medical termination it’s for a reason. Cos once they’re here u lose the ability to help in any way. They can suffer n u can’t do any bring about it once they’re here. But every case is different n there might be better odds for ur little one ❤️
U need to speak to the doctors n get more answers ask for results of kids on similar positions etc find out worst case n best case n b absolutely sure before u make a decision X
Don’t abort your baby ❤️ imagine if you did and then you thought what if we didn’t, what if the child lived a happy life and thought through all the problems, you would hate yourself. I say be strong and carry this pregnancy out, then deal with any problems as they come once the babies born. Hopefully you’ll baby. Will be a fighter and pull through anything it goes through . Stay strong, think positive x
This is Henry. He was born with complete atrioventricular septal defect, and Down Syndrome. He is 31 day post op ohs. He even has a fb page about what that was like. Check it out. Search: Henry’s Great Zippering Adventure.
Will my son be cured from his surgery? I don’t know. So far he’s doing great, on no meds, and seems pretty typical of a six month old. Is there a possibility that further surgeries might be required? Yup. We’ll cross that bridge when we get to it.
My brother had serious heart defects and had open heart surgery as a newborn. Looking at him now you’d never know aside from the scar on his chest. He’s turning 30 this year 😊
I was born with avsd, faulty valves, parents were told I wouldn’t survive surgery. Then said I wouldn’t make it 13. I’m 28 now and fine!! Also told I wouldn’t have children as child baring would cause too much pressure on my body. I gave birth naturally to a perfect boy 20 months ago 💙❤
My sister has a hole in the heart, sounds similar to this. But she lives life to the full, they can heal over time. We just have to be careful when she starts exercising as it puts strain on her heart, doesn’t help she’s unfit but hey…
Our girlie had artery from heart to lung missing, hole in heart, enlarged heart and wasn’t detected till3mo the of age…rushed to Bristol.had heart op…now top sprinter super healthy lovely girl.goes a bit blue occasionally and is at high risk of infection so can’t have piercings etc but otherwise if u didn’t see the scar you’d never know. She made need surgery as an adult at some point as her valve is leaking slightly again but if she stays at fit as poss it dramatically reduces the risk. Amazing things r possible these days xx good luck xx
My niece is our miracle. She was born with many complex heart conditions. She has had the most amazing care off our NHS and she lives a perfectly normal life. She is my inspiration and nothing will get her down, she has even took part in all sorts of sports and ran races! There are some fantastic heart surgeons who really do perform miracles x
Be there for your baby regardless, the baby just needs their mummy’s love. It will be hard and am talking from experience as single mum of 2 boys with special needs and due Monday with little girl from different partner who doesn’t wanna be involved. Hope your ok huni x
My heart goes out to you…..but I don’t know if you believe…..but I will pray for a miracle that your beautiful baby will be strong and healthy enough to survive any operation and be protected by the Lord Jesus presence as we all are his creations. I also pray that you will feel his presence and be strong too in faith.
All my best xxx