Marie-Helene's Story: Welcoming baby Raphael 5 February 2019 Marie-Helene was unwell throughout her pregnancy, but her symptoms were dismissed as a normal part of pregnancy until she was close to death. Here she shares with us her story. I discovered I had Addison’s when I was eight months pregnant with my second child. I was 36 years old and living in Geneva. I was happily married to a supportive husband and the mother of a four year old boy. I thought I was going to die as well as my poor baby. My pregnancy had been difficult from the beginning. I had no problem getting pregnant –which I now know is surprising for someone with my medical condition, untreated – and was delighted to know I was expecting a baby. Today, though, I can’t remember myself being pregnant, only sick. I could not enjoy it like I did with my first baby. I had a lot of back pain; it was as if my back was made of ice. I was also vomiting from morning to night. I could not bear any smell or odour – either perfume or food. My blood pressure was so low that I could not even go to the bathroom by myself. I stopped taking care of my son. I was not even able to cuddle him at bedtime, as I could not move. My entire life was collapsing I went to my gynecologist many times to explain how bad I felt. Just to get there was such an effort: I had to dress and go in the car, which made me so sick. I had to take a lot of anti-nausea medication – but could not take anything for my blood pressure as I was pregnant. I now think that during the first six months my doctor simply did not pay attention to what I was saying. My color was so dark that I didn’t look like someone who was spending all her time in bed. He just thought I was another lazy woman complaining about everything. As did my family. Everybody was upset with me: my mother because I was not eating while pregnant; my son because I was in bed not doing anything with him. Even my husband, who told me to stand up and brush my teeth by myself. At the time, he was doing it for me, in bed, because I was so weak, and even that provoked nausea. My mother-in-law told me to take care of others, not just myself. Admitted to hospital, lonely & afraid After Christmas, I was in such bad health that I had to be admitted to hospital to be re-hydrated. I stayed there for eight days. During that time, the doctors ran some tests and said the baby was pushing my intestines. But they had no explanation for my blood pressure and dark skin, other than it would probably go away after the delivery. I was relieved to be an in-patient, as it meant everybody was starting to take it seriously and believe what I was saying about my symptoms. I also missed my son so much, and was so scared for this little baby. What was happening to me? Why was I feeling so lonely among the people who are supposed to love me the most? At seven months, the doctors became concerned that the baby was not growing well and I had put on only 5 kg. My mother was getting scared; I could not hold my food any more and vomited everything back up. I was clearly anorexic. At that stage, I felt so bad that at my last gynecologist check-up my blood pressure was so low they could not get a blood sample out of me. It was my mother who talked to our old family GP about her concerns: my vomiting, low blood pressure and heavy tan. He told her about “the bronze disease” as Addison’s is known in France. So then, at my mother’s insistence, they finally sent me to an endocrinologist A brutal diagnosis As soon as he looked at me, the endocrinologist said I was not well, too dark. Again, they could not get a blood sample because my veins were too soft. At that point I fainted and they sent me to the hospital as an emergency admission. There, they had to give me an anesthetic before taking blood, and my husband flew back in a hurry from a business trip. Now, they were so sure I had Addison’s that they wanted to put me on a high dose of hydrocortisone before the results of the blood tests came back. My initial reaction was to refuse, reasoning that since nobody had believed me for so many months, how could they suddenly know what to do? The doctors answered that if they didn’t, I was going to die and my baby as well. One week later, I was eating again and putting on weight, but still thinking that I was going to die. They sent a psychologist to talk to me. I told him that if he wanted to help me, he could take my place. Follow your own feelings. We, not the doctors, decided that I would have a caesarean delivery. At first, the doctors wanted me to have a normal delivery, as the baby was in the right position. But I knew I would not be strong enough to do it, as I had with my first baby. When you are pregnant and sick you must trust yourself. Don’t let other people decide for you – as to whether you are really ill or just experiencing pregnancy symptoms, or whatever else. Welcoming Raphael - "God heals" Two days before the caesarean, I went to see a priest and told him that if God permits, the baby’s name would be Raphaël. I also cried a lot because I was not ready to die. The day I went to the maternity unit to give birth, I received a letter from the priest telling me that Raphaël means God heals. I had a risky C-section, surrounded by doctors and endocrinologists, with so much hydrocortisone being pumped into me that I looked like a balloon afterwards. But I am still here and my baby is healthy and well. I think that my baby and I saved ourselves and that he arrived in our lives for a good reason. Now, I am just trying to live a normal life and be a mother to my two children, although after such a severe illness it is still difficult. This is not an easy condition to manage and it takes a long time to regain your strength. Thanks to the ADSHG website I learned a lot about my condition and how we can support each other. I will always be grateful for that. If my story can help somebody else, especially someone who may one day learn that she has Addison’s while pregnant, I would be very moved.