Fetal medicine appointment

[AquaDuck]

To keep this short, on my 12th week scan we had some "things wrong" with the baby, they referred me to Fetal medicine and I have an appointment today!

I am wondering what to expect? Usually my appointments consist of drinking gallons of water and trying not to pee my pants for an hour or so but I have not been given any information or directions regarding this appointment so I am completely clueless as to what I should expect??

Baby had too much fluid behind the neck and lots around the neck, hence the referral. I've had blood tests but no results yet and have been referred to have a heart scan and things for baby but I haven't a clue when this will happen. Maybe today? Anyone been int his situation, any advice would be fantastic thank you!

Well I got my answer. Severe heart problem (one side smaller than the other) had. CVS and got my blood tests back all in the same day.

1/2 chance the baby has down syndrome...so yay..

I am so sorry! Are you going back for more tests?

@AquaDuck so sorry my love 😔 How are you doing? Have they offered any further support?

I don't have experience of this but I think there is a forum for antenatal testing with lots of helpful threads on. Also I've heard the ARC charity are good.

Sending you a massive hug and hope you've got some good support around you. 💕

Sorry you are going through this. I was under fetal medicine for 2 pregnancies. When do you get your CVS results?

Thank you: it's awful. They told me it will be by Friday, Monday at the latest. They will call me.

So sorry. I was under feral medicine for my 4th baby. I had a lovely consultant who saw me at every appointment and delivered ds as well. Now I have a very delightful 10 year old who has learning disabilities and health problems. He is very determined and is about to start mainstream secondary school.

Thank you! I'm okay, just stressed out by it all. It's the waiting to know, they haven't really told me much positive to be honest, they said most babies die before birth or shortly after in severe cases (with the heart) but of course plenty of people are blown with downs and love a long life so eek.

They have said if my tests come back positive and we definitely have 'something wrong' they won't do any other tests, and if they come back negative they will do more tests and refer me to cardiology for more tests on the heart. I'm still optimistic, as best as can be- it was a 1-2000 chance anything could be wrong and we have two things wrong on the scans, and a 1-20 chance of a miscarriage with the CVS, every scan I have the little one happily waves 😂 and the heard sounded strong today, so I'm really hoping things get better atleast just enough for baby to be okay.

The 1/2 chance. Seems very bleak.

That is wonderful though! I've been worried as I am so fine with a baby who has something wrong, or disabilities etc, my only worry is constantly "but how severe will it be and how long will they have?" It's an awful thing to keep thinking about but I can't help it.

It seems my quotes are not quoting! Apologies for that! X

I'm sorry OP. I was there with my 1st pregnancy at 12 weeks also. My baby had patau, so it more clear cut that it was indeed life limiting. I chose TFMR.
I too was going to suggest ARC. Happy to answer any questions OP, or PM me if you prefer.
Remember that this isn't your fault and you aren't alone ❤

I'm so sorry that you are going through this @AquaDuck I remember all too well the hell of waiting and wondering and worrying. Whatever your results, you will find there is a whole community out there who are, or have, experienced what you do. It's like a club that you didn't even know existed until you are in it. I encourage you to reach out and seek support from others. As a pp said, you're not alone

Firstly i want to thank those who replied.

Sadly, and it breaks my heart to say this which is kinda awful to say considering ,

Baby girl (half of our prayers came true) has a severe heart condition, she is not expected to make it. I was advised over and over again to terminate, and I've opted not to even though she's most likely going to die before birth or just after. She's still out little girl.

She has two holes in her heart and a common valve, thanks to her Down syndrome that has been confirmed; her heart is working overtime and it is not pumping blood where it should do. Medical professionals are 99% certain she will die. One side of her heart isn't growing because it can not get enough blood to it, but we just can't 'kill her' so we are hanging in there and expecting the worst. We have informed the children their sister may never come home and we are fully aware that no matter how much we pray her heart just won't work.

We aren't expecting any miracles at all, we know what's coming. It's just heartbreaking. I wanted to update incase anyone was interested in the outcome.

Thank you again

Hi @AquaDuck - I am so sorry that you and your family are going through this. I can’t imagine the pain and heartbreak, but I had to comment to say how much I admire your strength in dealing with this. You might not feel strong, you might feel as if a pinprick would be enough to break you right now, but my goodness your little girl is so lucky to have you advocating for her even when the odds are so stacked against her.

Good luck with the rest of the pregnancy, and I hope you get some moments of happiness in the months to come 💕

@AquaDuck I'm so very sorry to hear this. My first baby had Patau syndrome and we opted to continue despite being encouraged to terminate. Our daughter wad stillborn at 32 weeks. I can relate to some of your feelings I'm sure and am happy to chat if you would like to. Do you have a name for your daughter?

Thank you i really appreciate it, we did decide a name very early on; Evelyn xx

Thank you! It means a lot.

@AquaDuck That's a really beautiful name

My partner has a thing for girls names related to flowers so we chose Evelyn-Rose as I always said if we had a daughter I would have to name her Evelyn. If we ever have another, (if baby doesnt defy the odds and survive) id have to call her "daughter" because I have no other name ideas at all.

We haven't cried and broke down about it yet and we know there's time to, I think we're trying not to "just in case" even though, we know.

But if you give up' I just can't imagine it. All we ever wanted was a little girl and we got one who most likely won't survive. It's more than a kick In the gut because we wish we could do something and we can't do anything. Apparently in American, they can do stuff but not here in the good old UK. IF ONLY we could move. Albeit only for a short time.

It's just not fair is it. I remember feeling so strongly that there must be someone, somewhere who could do something.
Our baby was called Poppy way before we knew that she was ill. She ended up being born just before Remembrance Day. Evelyn Rose is such a pretty name.

Evelyn Rose is a beautiful name. Have you thought about making memories of her while you are pregnant, like getting a 3d scan, recording her heartbeat etc?

@AquaDuck aw I'm so sorry to read this update. Evelyn Rose is a beautiful name. Sending you lots of strength and love at this time. 💗

We are considering a 3d scan, we are trying to decide when is the best time we dont want to do it too late or too early* and we have a heartbeat recording already x

Thinking of you, your family and your beautiful daughter, Evelyn Rose 🌹 🩷

Unfortunately our Little Angel got her wings yesterday 👼

I'm so sorry to hear the sad news about Evelyn Rose. May she fly free 🌹