Should I be upset that my bubs deformaties were'nt picked up?

[Todd]

Long story short. We just had a beautiful baby boy 6 weeks premature. He was born with DiGeorge syndrome, ie 22q deletion syndrome. When he was born he had Talipes of the wrist and feet ie Clubfoot and Clubhand. He's missing his radius bone in his arm and missing his thumb. He also has a heart condition known as Tetralogy of Fallow which includes having a hole in the middle of his heart. He has an extra rib and some half vertebra's missing in his spine.

Now my best friend is quite alternative and didn't have an obstetrician or do any scans and had a home birth to a perfectly healthy girl. Im not like my friend though. I wanted the best obstetrician to do as many scans and tests as possible to give me the best chance at having a healthy baby. So we got the most expensive most recommended obstetrician we could find.

As we lost our last baby at 20 weeks, we wanted to get scanned more often than normal to which we did. My wife also had gestational diabetes which meant she had to be closely monitored. So she was scanned every 3 weeks and even had a 3d scan at 32 weeks I think. Our obstetrician did all the internal and external scans himself and didn't pick up any of these problems the whole way through. He never referred us to get scanned at a proper Radiography Clinic neither.

We went through IVF with him to which I find out now that they can pre-test the eggs for chromosomal problems before they implant. You can also get a blood test for DiGeorge syndrome to which he never informed us about.

So I don't know if I should be upset with our obstetrician or whether all these things aren't that easily picked up. Im definitely angry with myself to the point of anxiety and depression.

Would just love to hear someone else's opinion or if anyone else has been through this similar situation.

Thanks
Todd

 

[Papermoon]

Wow sorry to hear about your baby. It's hard to believe they missed all of that with so many scans! I don't know what to tell you except sorry that happened. I don't see how that happened at all.

 

[jlaine28]

So sorry your having to go through this. I would definitely sit down with your Dr or another Dr and find out why this wasn't found earlier.

 

[CARNAT22]

I assume you are outside of the UK?

What are the protocols for medical negligence (although of course this isn't exactly negligence in the classic sense of the word) but it seems incredibly worrying none of it was picked up?

I think the main thing you need to do is concentrate on your wife and child and coming to terms with things. Nothing can change the situation so you need to be mindful of how you approach this new chapter.

Best of luck.

X

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[BunnyN]

I know in the scans I have had fingers and toes and toes and ribs have been counted, arm and leg bones were measured and heart and vertebrae were checked. I have had private scans done by a very good private doctor and they are very detailed and quite lengthy. The state health system scans I had were much quicker but still checked important measurements and that all the basics looked right as far as fingers and toes etc. I have known other babies born with heart defects that were missed. Sometimes the baby in a position that not all the limbs can be seen properly. If the sonographer thinks its important he will ask for a repeat scan but sometimes they will just write on the report that those measurements weren't taken and they will try to do it on the next scan, if there is another. Often the 20 week scan is the most detailed and others are just a quick check to make sure heartbeat is strong and baby is growing at a normal rate. I think it is perfectly possible for defects to be missed sometimes but it does seem out of the normal that so many things were missed.

Sorry you are having to deal with this it must have been a real shock for you and your wife at the birth not to have hqd any warning especially with so many scans etc. I admit I can see the advantage of not knowing and worrying about it the whole pregnancy but its a sho4k to find out unexpectedly. It seems like a good idea to make inquires about what happend and possibly put in a complaint but like Carnat says what is most important for you and your family now is to be here for your wife and boy and getting too caught up in what went wrong might not help. Maybe there are suport groups online that you can join for famlies effected by the syndrome that will help you get extra support and advice?

I hope your little boy is not too poorly and is receiving good care and you are all getting good support. Do your best to enjoy your baby and make the most out of your first months together. They grow so fast!