Got my angel's autopsy report - so upset - UPDATE

[Fit_Mama2Be]

After losing my little boy at 14 weeks in February I finally got to go in and meet with the genetic doctor and counselor. It was awful.

My son was diagnosed with a severely enlarged bladder at my nt u/s and neither kidney looked functional. He also didn't have a nasal bone and his nt measurement was high at 2.6. He passed away a week later.

The autopsy showed he also had a serious heart condition and a problem with his left lung, so the doctor said it looks not like a random occurance but a genetic syndrome. Only they don't know what kind as it doesn't fit the parameters of any known syndrome and it can't be a chromosome problem because his chromosomes were normal. Since they know nothing, the doctor has given us up to a 25% chance of reoccurance.

Now I'm scared to death for this baby even though we had a detailed anatomy scan done at 12 weeks and everything looked perfect because the doctor made me feel like this pregnancy (and any future pregnancy) is doomed.

The doctor even said all we can do to diagnose this "syndrome" is wait and see if I end up having multiple pregnancies with abnormalities. Then he asked how I was feeling and when I said I was scared he said "oh, how come?" Are you freaking kidding me!?!?

He is doing a level 2 ultrasound in a month. I honestly don't get what the point of scaring me to death and leaving me to stew about it for an entire month is when there's nothing I can do anyway.

So stressed out and upset.

 

[Iren_iren]

Oh hun, sorry for your loss..glad all is fine with this baby! So fingers crossed for next scan
I am sure doctor just wanted to give you all the information and details as thats his job, obviouselly he did not take into consideration your feelings.

 

[amy2015]

*hugs* some ppl, doctors included can be so callous. That's a terrible way to leave you.

Stay strong and think positive. Everything looked good at 12 weeks, so baby's probably all right. Fingers crossed tightly for you.

 

[kneeswrites]

I feel like a lot of doctors, and honestly just people, especially men, don't understand that when we're pregnant we have a child. Like, it's not just a pregnancy, it's our child, and when doctors go all medical and no emotion they say such callous things. They don't seem to give pregnant women the tact they need during such a scary and tense time.

I'm so sorry for your loss. I am sure everything will be fine with this baby especially since you said you had a perfect 12 week scan. It doesn't sound like the same thing has happened this time, thank goodness.

 

[Blu10]

Oh fit! Im sorry the counsellor was crappy hun. Hey found issues on the first ultrasound with your angel baby didnt they? Everything looked perfect this time and im sure baby fit will be just amazing. I totally understand your worry but even if the risk was 25% that means you have a 75% chance of this baby being perfect. Hugs xxxx

 

[mommyB]

I'm so sorry! your doctor kinda sounds like an ass. As hard as it is i think you need to ignore the doctor and focus on the fact that this babies genetic screening results came back normal. And focus on the positives. I pray that you have a perfectly healthy baby. xx

 

[EleanoirRigby]

I'm so sorry for your loss, some doctors get so calloused by their jobs they forget empathy. I know it's going to be a long month of waiting for you, but on the positive side, the 12 week scan looked great, right? And as Blu10 said, the 25% chance of something going wrong is incredibly painful, but you have a 75% chance of everything being perfect. Thinking of you! Keep us updated!

 

[ElmaWG]

Well I can understand why would be so scared and definitely stressed out. I would be too! Drs are sometimes too removed from their patients to really be able to relate to or understand what they are going through. Maybe some are better, but your doc really seams out of touch.

I haven't read all the other responses, but I think some reassuring word are in order. First of all, when the doc said you had a 25% of a similar problem occurring again, it sounded like guess. And even if true, there is a much greater chance this current baby is fine (75%). And because your ealier unltrasound didn't show the same symptoms as your angel, it sure sounds even more unlikely this baby has the same problems. So im feeling like your baby is going to be okay. Of course it's easy for me to say this, but I'm sure you'll still be very worried, and there is probably no help for that. Until you have your anatomy ultrasound. Good luck, hon!

 

[Mrs_Bump]

I'm so sorry for your loss. This must be very stressful for you but it's great news that your baby was looking good at the 12 week scan. I too am having a high risk pregnancy, in my case there is a high risk of my placenta shutting down. The thing is there is nothing that can be done in my case our yours but the fact we are being monitored means we can at least be prepared. I really hope it all works out for you and so far things are looking good.

 

[LilianA]

Im so sorry hun.. When i was pregnant with my second we got an Autism diagnosis for my first and he recomended genetic testing to see were it came from(totally unnecessary and only a cause of worry) when we got the results he had two genes with abnormalities and said the chances for us having other kids with Autism is 25% at the time that25% seemed bigger than the 75% of it not happening! And we ended up having two more boys that fell in that 75% normal range.. I am in constant fear and my brain is always working on this subject when im pregnant...
I hope all your u/s s go perfectly and you end up with very healthy babies...
Doctors need to take lessons in emotional support because they can make or break the parents with their poor choice of words.

 

[blueblue]

I'm so sorry for the loss of your little boy. Sorry the doctor wasn't more understanding, sounds like he didn't think about what he was saying x

 

[Tricks26]

I'm so sorry he made you feel this way the only comfort I expect that hopefully with this pregnancy they will keep a close eye on you and hopefully you will get more scans xxxxx

 

[nicb26]

I am really sorry for your loss, and for the scary news about the probable chromosomal issues.

However you still have a much better chance that all will be fine than the other way around, and if all looked good at the NT then I would say you're probably going to be fine. I understand the worry though, I would definitely be the same.

 

[Fit_Mama2Be]

Thanks ladies for all your kind words. I'm feeling better about things now.

The 25% is a worst-case scenario I think, but like you ladies said even if it was 25% that's still a 75% chance that Baby will be fine. After my son's devastating 12 week scan we knew there was pretty much no chance he'd survive and believe it or not I would have been over the moon if there had been even a 25% chance he'd live. I am so grateful for how perfect everything was at our 12 week scan this time.

I do wish the doctor could have been more positive (and certainly could have done without the references to my son as an "expired male fetus with multiple abnormalities") but on the plus side at least he is not taking my angel's death lightly and there is nothing wrong with this baby getting extra monitoring as a result.

So far this Baby has looked nothing but healthy and perfect and has given me no reason to worry. When I got home from that awful appointment I got the doppler out right away and could hear Baby kicking like crazy in there and DH said "see? Instead of listening to what that doctor's telling you, you need to listen to what the BABY is telling you."

For those of you going through high risk pregnancies or dealing with percentages like mine I'm sorry that you also find yourselves in a stressful situation during what should be such a happy time. Fx all the worry is worth it when we get to bring our healthy babies home!

I will keep all of you posted.

 

[Fit_Mama2Be]

Just had our level 2 ultrasound / fetal echocardiogram - this time Baby's kidneys, bladder, heart and everything else look absolutely perfect - thank God.

We were supposed to meet with the doctor that traumatized me after our ultrasound, but after he reviewed the results he cancelled our appointment and just sent the genetic counselor in to reiterate that everything looks perfect.

So happy and so relieved!!!

 

[amy2015]

Good news! Congrats

 

[dollyminxture]

fab news, congratulations. Can't imagine the worry you've been going through, hopefully this rainbow baby will be perfect in every way xx

 

[ElmaWG]

So glad to hear this!

 

[KandyKinz]

Hugs...

I think the key words from all of that are "since they know nothing".... Their projected likelihood of this happening again is not based on scientific data as they haven't a clue what happened to your first, but rather it's merely just their guess. There's still much hope for a better outcome this time!

 

[KandyKinz]

Just read the comments and your update. So glad you received such reassuring results from the u/s!