HHT afftecting unborn babies

[MrsMarshall]

Hi

I recently lost my son during pregnancy at 24 weeks.  He had a problem called Hydrops fetalis which is similar to heart failure in adults.  Something caused this and the post mortem couldn't find the cause.  There was an abnomal flow of blood in his liver which was picked up on one of my scans, but my consultant dismissed this as he believed that wasn't the problem.  As the post mortem hasn't shown anything they have told me to get checked for HHT.  Most of my mother's family have HHT and out of 5 cousins and my brother I'm the only one without the nosebleeds and bloodspots.

I have found some information about HHT affecting the mother during pregnancy but not the baby and wondered if anyone has any problems or experience of HHT affecting their unborn baby.  None of my family have had any problems with pregnancy or birth but I am desperate to find some answers to why my baby died.  My consultant is a waste of space and I've found more information than they have.

Sorry to bring up a difficult subject but I really need help and advice if anyone can help me. 
Sorry the post is a bit long and thanks for reading

Jo x x x

[dianelou]

Hi Jo,

My knowledge of HHT is very limited.  My husband and his family all have it.  But I couldn't just read your post and not reply.  My heart goes out to you.  I found this info on the internet (Telangiectasia Self Help Group)

Why should pregnancy affect HHT?

During pregnancy the circulating blood may increase by as much as 60%, which is normal and essential for the development of the baby. This means fragile blood vessels may be more prone to bleed. The body copes with this extra blood by making many of the mother’s blood vessels dilate, and these do not always return to their pre-pregnancy size. In spite of this, the majority of HHT pregnancies are safe for the mother with HHT and for the baby.

Will the baby be all right?

Two published reports have now shown that the miscarriage rate is comparable in HHT and non-HHT pregnancies. Obviously, on average, one-half of the babies born to an HHT mother (or father) will go on to develop HHT, but there is no evidence for additional abnormalities developing more commonly that in non-HHT pregnancies.

It is import to realise that even if pulmonary AVM’s (PAVM’s) have caused a very low blood oxygen level in the mother, the baby can still develop normally, though amongst the women in our series with the lowest oxygen levels, premature births of healthy but small babies were common. If you have low oxygen levels, your baby’s growth would probably be carefully watched by your obstetrician.

Diane x


rtvpk

[Matt]

Welcome to the site, but sorry to hear about your loss 

[MrsMarshall]

Thank you

I'm going to see my GP tomorrow to be referred to a specialist and hopefully to a fetal vascular specialist too.

I will print off the info on the link you gave diane and hopefully they will be able to use it to help me.

Thanks again

Jo x x x

[Carolanne]

Hi
I had two children, now aged 31 and 29 (girls).  I didnt know I had HHT back then, but the HHT did affect me badly.   I became very aneamic in pregnancy and had iron injections.  After my second baby I was very aneamic again, but they thought this was childbirth.  I was diagnosed with HHT a few years after their births, but had suffered nosebleeds all my life.  My father was the carrier as this was his symtoms and he was diagnosed first.  I didnt know back then that my AVMs were in my stomach and small intestine.  I just know that I have been aneamic all my life since my pregnancies.  I now have weekly iron infusions and have built up my blood stores to 30.  Wow!  We are aiming for 100, but my HB  is still only 8.5.  I do have better quality of life now though.
My babies were perfectly healthy and neither have HHT.  My grandson does have a few nosebleeds which I am monitoring.  They are quite random and I just pray they dont develop.

Anyone else seriously aneamic?

Regards/Carol

[philbarto]

I am so sorry about your loss but I feel if you need answers to why your first step is to see a geneticist and find out if you have the hht gene if not then your answer lies outside hht. the test takes 5 minutes but the result is 9 to 12 weeks hope this helps
regards   Phil

[scorpio]

Hi, sorry for your loss. There is a consultant at Queen Charlottes and Chelsea hospital in london, Mr  Andrew McCarthy, who has specific HHT experience and has just done some research on HHT and pregnancy. I am under his care although I have not yet met him or his team but maybe he could be of some help in answering your questions. Also Dr Claire Shovlin at Hammersmith Hospital is experienced in the HHT field but her area of expertise is respiritory. Hope this is of some help. Take care, Scorpio