Hello everyone, but especially all of the women out there with AVM's in their uterus. I though I would post an update about my recent, and fortunately successful, pregnancy.
A bit of background - I had a haemorrhage when pregnant with my daughter in 2007, and as she was 36+3 weeks when I had the bleed, my waters were broken and Amelia was born that day. No one ever knew the cause of the bleed.
Then in 2009, I was 8 weeks pregnant when I had a life threatening haemorrhage, and was within minutes of bleeding out. Unfortunately, in order to save my life, the pregnancy was terminated. Again, no one knew what had caused the bleed, but I hunted and hunted and eventually found out that I had a uterine AVM, and that it had "burst" causing the bleeding. Additionally, I discovered I have von Willebrands disorder, which is a bleeding disorder, so when the bleeding started, this complicated to me ending up in DIC (disseminated intravascular coagulopathy, or bleeding out).
I found a radiologist in Sydney, Lourens Bester, at St Vincents Hospital, who looked at my MRI and referred me to a fabulous obstetrician in Newcastle, Jillian Spilsbury, and she has treated patients with them before. So, she did ultrasound scans of the myometrium (lining of the uterus) and found the AVM, which showed fast flowing blood vessels in the myometrium, and referred me back to Lourens who did an embolisation.
Now, I know those of you in the UK and US do this under a general anaesthetic, but here they just gave me a local, and the pain was so bad that I passed out, so if I ever had one done again, I would demand a general, but Lourens was great, and I went back to Jillian, who confirmed that it was resolved.
Then I consulted with my OB here in Canberra, who went to uni with Jillian, and we planned what we would do during a pregnancy. Once all of my doctors (I also have a bleeding disorder and Ashermans Syndrome - uterine/cervix scarring, I know... terrible obstetric situation) we decided to have one go, and see what would happen.
So, we got pregnant fairly easily, and started on 4 weekly ultrasounds, that got closer to 3 weekly as I got further along. It was evident at about 18 weeks, that I had a placenta accreta, where the placenta adheres to the uterine wall, and this accreta was directly over the AVM site. My sonologist (specialist sonographer) believes that the accreta and the AVM are cause and effect. That is, because I had the AVM in the myometrium, the placenta adhered over the top. As a result, the placenta was also low lying (as it couldn't move up as the baby got bigger), and so with everything else, a planned c section was booked for 36 weeks. It was fortunate I was being heavily monitored, as an accreta discovered at delivery can cause severe haemorrhaging.
Unfortunately, at 33+5 weeks, my waters broke, and I went in to spontaneous pre term labour, so my son was delivered the next day via C section. The placenta adhered and had to be carefully separated. I also lost a fair bit of blood.
However, at the end of the day, my son, Jakob, is now 8 weeks corrected, or 3 months from birth, and we are all well. This is it for me, this pregnancy was risky enough, so we are not having more children, but I am blessed with the two I have.
If you have a uterine AVM and you find this website, please feel free to contact me for support or advice
Amanda Buykx
Canberra, Australia