My name is Allison and I live in the U.K. My AFEi happened during the birth of our daughter in 2010.
I was already in hospital at 37 weeks needing to be monitored carefully due to of pulmonary emboli that occurred while coming down with pneumonia while I was pregnant. The consultants did not want me to have a c section because of the possibility of bleeding as I was on anticoagulant therapy due to the pulmonary emoboli. My waters were broken and I was put onto a monitor so our baby could be monitored. When no heart beat was detected, a second machine was bought in and suddenly I got really bad pains in the back of my head and chest. I had never experienced anything like this before, several midwives and doctors rushed in and they performed a shock delivery immediately. I didn’t stop bleeding and an emergency hysterectomy was performed. I again continued to bleed and was given 2 blood clotting agents one of which had to be flown in from another hospital as the first one did not work. I then developed DIC and I began to bleed from everywhere, the operation site, ears nose mouth and eyes, even through my skin, packing had to be sewn into the operation site and removed two days later. I was swollen two twice my normal size. I spent 5 days in intensive care and then a further 6 days in the high dependency unit.
Our daughter survived after spending 9 days in intensive care and SCBU (special care baby unit). She had suffered septicemia and was suspected of having epilepsy but thankfully she didn’t. Although she is on the small side lots of lengthy tests and observations have been performed and nothing has been found and there is no evidence that this is down to what happened to me during her birth. She is a very bright, active and intelligent little girl.
After coming home I was lucky to have a very supportive husband and family. We were supported for the first year with health visitors who came regularly every week and I had regular checks at the hospital. Although we had a lot of support nobody could help with the feeling of being totally on our own as there was no one we could talk to who had gone through the same thing as it is so rare. Although medics friends and family were there to listen they couldn’t understand fully, there was an awful feeling of complete lonliness about it all. I did look on the internet for a long time and tried to research it myself and by chance found AFE Foundation in the US. I joined the support groups and suddenly I didn’t feel so alone and was able to connect with others in the U.K. I also received 10 weeks of counselling which involved CBT therapy which helped enormously. Unfortunately my mum died unexpectedly 6 weeks after I had the AFE which traumatised me more so I had a lot to cope with and again the counselling helped with this. It was also quite difficult talking to my husband about it because he was suffering quietly to himself because of what he had witnessed and went through and he was trying to be strong for me. He also kept a lot of what happened to me from me as he knew it would upset me so it took him a long time to gradually answer questions that i had and to tell me the full extent at what had happened. I feel so guilty as it must of been so traumatic for him to watch his wife and baby be so close to death and to be told by doctors that neither of us were expected to live and he should prepare to say goodbye and that he should ‘pray for a miracle’, which he got.