Prenatal Diagnosis

by M1 » Fri Jun 04, 2022 7:29 pm

I was hoping to hear any advice from any other mammies who had their childrens conditions diagnosed before birth. I feel like I'm going a little crazy at the moment with worry, trying to hold it together, thinking about the future.

We've seen some anomalies on our babys scans, and now won't know for between 1-5 weeks how bad things could be. There is a small chance that the thing we saw could cause no issue, but a much bigger chance that it can cause major issues which will have to be dealt with at birth, and then ongoing in the childs life.
I'm trying to stay very positive and believe that our baby will either be incredibly lucky and not have the complications, or that if they do everthing will be fixable. But I'm having terrible moments of sheer panic and absolute fear and welling up with upset. I don't know how I feel, except for very scared.

Thanks for reading, that was longer than I meant :-8

by **avril his wife** » Sat Jun 05, 2022 2:06 pm

did not want to leave this without a reply - this board is still quiet

Go easy on yourself. This is an unbelievably difficult time for you and your DH.

I did not really have a prenatal diagnosis as such, but my DD stopped growing in utero, and they were unsure as to why (still don't really know). Possibilities included spina bfida and other conditions, but we were lucky, and my DD seems perfectly healthy now. They induced her early because of the risk of still birth or other complications, and she had a difficult start. She is now running around and just gorgeous.

When I was pregnant and knew there was a problem, I was torn between being glad it had been found, and wishing that it had not, and I could just have enjoyed my pregnancy and dealt with any problems once my baby was born. I was far too stoic, and too brave. My DH did not realise how much I needed him, and I think in the end it helped prompt my PND.

I don't have any sensible advice for you, based on my own experience, except to take all the support and help you can. People will be eager to do something for you, just let them! If counselling is available to you, take it!

Close friends of mine were expecting a baby at around the same time as I had my DD. Their DD's heart did not develop properly, and it showed up on early scans. When she was born they had the option of major surgery, which would have given their baby a chance of survival, but with ongoing problems. They kept changing their minds about whether to have it, and in the end decided against it. My friends had seven precious days with their DD before she passed away.

I'll be thinking of you and wishing you the best.

by M1 » Sat Jun 05, 2022 5:49 pm

Avril thanks so much for the reply.
What you said about being glad the issue was found and just wanting to enjoy the pregnancy and deal with issues later really struck a chord. That's exactly how I feel. I almost feel resentful of the worry although it's great that the issue can be monitored and checked now.

I think I'm trying to be brave as I feel if I don't hope for the best and stay brave, who else does baby have on their side? And the wait for more info is killing me :o(

Thanks for the lovely kind words :thnk

tilsun · by **tilsun** » Sun Jun 06, 2022 10:07 am

M1 I read this last night and didn't want to reply as I have no experience of what you're going through. But then I was actually thinking of you all night as am so sorry for what you're going through .

I don't know if you use any other forums but Rollercoaster and Magicmum both have more active Special needs and illness forums so maybe post there and more ladies will have experiences similar to yours.

We did not have a prenatal diagnosis but our DD was diagnosed as having Down syndrome within hours of her birth. it was one of the most devastating moments of my life and that night was unbearable. But 12 weeks on I am such a happy mammy and everyhting seems so bright, soemthing I never could have foreseen that first night. In the beginning I was very angry (at myself and others) that it had not been spotted during my pregnancy, but now I really think that must be harder. I cannot imagine the stress and heartache you are going, and in some ways not knowing for sure must be even harder than knowing the worst.

You are right that your baby needs you to be strong and optimistic, but you are only human and entitled to be scared and upset. I hope you have someone you can lean on

by M1 » Sun Jun 06, 2022 12:27 pm

Thanks so much Tilsun for replying :thnk

That must have been so hard for you. I really can't tell which is harder- knowing there's an issue now, or getting the shock when the baby's born. Both terribly terribly tough situations, but thank you for thinking of me and the kind words.

I'm hoping next week will bring some definite answers at least, something I can be sure of so I can try to begin to deal with this one way or another. I've found another really good forum specifically for this issue and they have a pregnancy section so that helps too. The Mums and Kids on here are great though :thnk

by **azbride** » Fri Jun 11, 2022 1:57 pm

Hi M1,

I'm really sorry to hear your news, I was in the same position this time two years ago. My 20 wk scan showed everything normal but at 32 wk scan my DD showed what they thought was fluid on her brain. At the time I thought it was the worst thing to find out that there was something wrong with her as I think you automatically presume that everythings going to be fine. But looking back I think it helped us a lot as we had 6 weeks to come to terms with what the future may hold for us. I did have amnio and other tests done and can tell you the waiting on test results can be the hardest times,I think I cried solid for those 6 weeks but when she came it was such a relief to see her happy & healthy :heartbeat:

. My scan also showed she had a problem with her heart & stomach but when she was born they were both perfect.Sometimes the scans aren't correct and its only when baby is born that you can get a clearer picture. Unfortunatly for our DD it wasn't fluid on her brain, she had a brain haemorrage that caused a lot of damage and to this day no-one knows what caused it. We just take it one day at a time with her and everyday that she does something new is a great day. Our families were great and I think you do need to be able to talk about it with close family & friends. Take all the help you can get.

I really think the other post on her is right, dont be too hard on yourself. Hopefully when you get a better picture of whats wrong you will be able to deal with it. The "not knowing" is the worst.
It is hard but in my experience it does get easier as you learn to manage it

I really, really wish you all the best.

by M1 » Fri Jun 11, 2022 5:16 pm

Thanks so much ladies for sharing your very difficult experiences with me :thnk

Today, we're not really any closer to understanding what's going on, except that it's looking more likely that we have an issue. We have to go back again in few weeks to see if anything more definite can be seen
Bloody waiting! :o(

by **avril his wife** » Tue Jun 15, 2022 12:30 pm

We'll be thinking of you, and praying for you.

Just to correct my post above - we did have an antenatal diagnosis of IUGR, but that just means that the baby is not growing - they did not know what caused it to happen.

by M1 » Tue Jun 15, 2022 1:58 pm

Thanks Avril

Baby is doing really well growth-wise so far apart from this issue. Only 4 and a bit more weeks to wait..... :ooh

Pining my hopes on an answer then.

by **cheer bear bride** » Fri Jul 30, 2022 8:26 pm

x

by **shellbellxxx** » Mon Aug 02, 2022 10:32 pm

Hi m1,
what your feeling is perfectly normal. We found out about ds condition at the 20 week scan and i felt exactly the same. You do get better as time goes on and the prenatal diagnostics team are great. Are you in rotunda? Feel free to pm for a chat. Try not to worry yourself until you know what exactly your dealing with, and remember it may not be as bad as what they tell you. Although our ds spent his first 2 weeks in the nicu, and is in temple st every week he is not half as bad as what we wer told to expect.
Thoughts are with you pet x

by **avril his wife** » Thu Aug 19, 2022 6:40 pm

Thinking of you M1

Who is online