Anyone feel very down and depressed after finding out their unborn had problems?

[Nikki2ol6]

Since finding out at our 20 week scan our baby's heart did not develop properly I feel so down about it thinking he's not going to make it, I'm nearly 27 weeks now and haven't bought him a single thing because deep down I don't believe he will survive. They have told me they will operate soon after birth. He will be in an incubator on loads of machines we won't be able to hold him and all he will wear is a nappy so in my mind he doesn't need any clothes and if he doesn't make it he won't be coming home so won't need anything at all. I feel like I am grieveing for this little baby wiggling around inside of me and right now he feels so perfect, he moves all the time and you would never guess he was problems from how active he is. But they said he's safe now but once he's born is when we see the problems of him staying blue and such. I feel so down and lost and alone. My midwife wants to see me every other week now to see how I am feeling and I see the cardi doctors and nurses and have a lot of extra scans to see how his heart is doing and if there are any changes. My head is all over the place and my partner feels hopeful it can all be fixed. Which they have said it can be but it's risky.

How very traumatic and stressful OP. You have had a terrible shock and that can't be underestimated. Of course you feel worried and don't feel like shopping for the baby because at the moment, it's like you're on pause until he gets here and you can see what's what and see what the problem is properly.

Have they said that the condition has a name or just that his heart isn't developed properly? Did they say which sections weren't developing?

I wonder if you could buy him a bear? It might make you feel better and though he can't have it in his incubator, he can see it from outside and have it when he's out of the incubator.

The skills of surgeons today is amazing....they can perform the most delicate operations successfully and by the sounds of it, they know what to expect when he arrives which sounds like a positive thing.xxx

Yes he has 3 things wrong he has DORV, a large VSD and cortation of the aorta. So basically both main vessels are in the same side of his heart, there is a large hole in his heart allowing all the blood to mix so he will get some oxygen blood but the vessel which takes the oxygen blood around the body has a slim point. That would need opened up very soon after birth, and the rest would need sorted by open heart surgery before his first birthday. The extra scans are to see if the aorta becomes any slimmer or if the side of the heart with no vessels in starts to shut down but as of my last scan both sides of the heart were the same size so that was good they said. I have other children too who were very excited about this baby and he's due at new year and we were all so exited but everything is falling apart. We won't know exactly how badly this slim aorta will effect him until he try's to breath and we see how much oxygen blood he gets round his body but he is to be taken away as soon as his cord is cut which they said they will leave the cord attached for 3 minuets and I get to hold him for those 3 minuets then that's it xx

Oh Nikki, how my heart goes out to you. I was in your exact same position a year ago waiting for my son to arrive at xmas, knowing his heart was poorly and that he would get taken straight into the care of the surgeons. I didn't realise how common CHD is until I got thrust into that world. Your baby is happy inside your tummy for now and you should try and enjoy that feeling and not stress too much, whilst doing as much research as possible so that you know what to expect at each stage x

Thank you for your reply. We have been to the cardiac intensive care unit and we're shown around and what to expect and such. It's all so daunting all those extremely poorly babies just lying there with so many wires and tubes and surrounded by machines. I'm trying to enjoy my pregnancy but I feel detached from my baby in a way that I can't explain. I think perhaps it's some sort of defence thing people have after being told something is wrong with their baby. Did you feel this way too?? How is your baby now?? Xx

Oh this is massive I know, but please don't give up hope. I know you want to protect yourself but allow yourself to grieve and get hopeful about what is to come and what could be. I know an incredible story of a baby who went through something similar (not sure exact diagnosis, years ago now) but doctors were not positive at all and similarly baby went into surgery straight away and had the first few months hooked up on lots of machines but now is a thriving much older child. Please go easy on yourself, allow yourself to process it, but also to live with hope. I'm sorry it starts off like this for you and your partner. I hope other people will be along to encourage you soon.
Wishing you and your baby well xx

So sorry you are going through this. My 3 year old has complex medical issues, some of which were discovered at my 20 week scan. He has hydrocephalus, cleft lip/palate and global development delay. He's had 12 operations so far with more to go but he is stable in between.