Louise's Baby Louise Krupski

My name is Louise Krupski and I would like to tell you the story of my pregnancy and the birth of my beautiful daughter, Isabella. I will start by filling in some of the background to my illness and its treatment in order to make sense of the whole process.

Isabella - age 16 months

When I was twenty-one I was diagnosed as having ocular Myasthenia Gravis with no detectable antibody. My treatment was the usual mix of steroid and azathioprine (Imuran) which has always been very effective for me. I have suffered several relapses but thankfully with adjustment of my drugs I have always recovered quickly. However the worst relapse I have had came as a result of discussing issues connected with pregnancy with my consultant two to three years ago.

In a regular check up I mentioned the fact that I would at some point like to have children. He seemed to think this meant that I was going to rush out to Baby Gap and buy six baby-grows in preparation for the imminent birth. The up-shot was that he took me off azathioprine as he felt that it was a very dangerous drug to be taking in pregnancy. The fact that I had no intention of conceiving for at least another two years did not seem to register.

The relapse was very frightening as I started to suffer symptoms which I had not experienced before. I am a secondary English teacher which means I have to do a lot of reading aloud in class. I found that after a few minutes my speech became distorted and I had to rest. What made it worse was that my consultant kept telling me that these were not symptoms of escalating general Myasthenia but that the sensations I was feeling in my face were connected with my weakening eye muscles. I knew that this sounded wrong. I really believed that if I didn't sort something out quickly my condition would continue to deteriorate. I was already off school, a situation I did not want, and for the first time since I was diagnosed I was frightened by the disease which I had always been able to manage.

I succeeded in getting myself a second opinion from Professor Newsom Davis. Within ten minutes he had diagnosed that I indeed had general Myasthenia and that he felt that I should immediately re-start taking azathioprine. He showed me his wonderful collection of photographs of bouncy beautiful babies all conceived and delivered by women on steroids and azathioprine. He also took the time to listen to me telling him that I was not going to get pregnant for a while anyway. Roughly two years later I fell pregnant with Isabella.

As soon as I knew, I booked an appointment with my consultant (a different one) to discuss my pregnancy. The day I went was very hot and I was just beginning to suffer morning sickness. In addition I am notoriously phobic about anything attached with blood, and so hospitals do scare me somewhat. During the visit I asked my consultant to tell me what the risks were associated with the drugs I was taking during pregnancy and also explain the problems I may have during the birth and the baby's health afterwards. I'm afraid my consultant does not have particularly advanced counselling skills and he reeled off a whole list of possible disasters which could befall my baby and me. For instance he pointed out the possibility of some kind of deformity in the baby, and the fact that if my strength did not hold I may have to have an emergency caesarean section. As he was not looking at me he did not see me start to shake and fidget as the nausea took over . I asked him if I could lie down, and as I did so I passed out. I woke up quite hysterical and it took me a long time to calm down. I was convinced that I had done a terrible thing in getting pregnant and that I was about to bring a poor disabled child into the world. I felt that this was all my fault and that I had committed a disgustingly selfish act in allowing myself to get pregnant.

Later I got angry that I had been treated in the way I did. Consultants need to be sensitive to their patients, not just in their medical treatment but in the way they talk to us and prepare us for what can happen. I knew, once I had calmed down, that I wasn't getting the full story, but I was also confused by this time, I had three different consultants all telling me different things, who should I trust? I decided to do my own research and contacted a pharmaceutical association. They sent me details of research done on the drugs I was taking during pregnancy. Without going into great depth about what I discovered I became much more confident that Professor Newsom Davis was the guy to trust. At the same time I had a very positive consultation with my obstetrician, the now famous Mr Gibb, who was very reassuring and promised close supervision throughout my pregnancy and birth.

My pregnancy was absolutely fine. I had all the usual problems, back pain, heart burn , nausea etc. but somehow these were welcome as they were so normal. The birth was fantastic, life can never be the same after something so beautiful. However the Myasthenia did intrude at one point, or at least for a doctor it did.

I had a very long and slow first stage of labour. After twenty-four hours of contractions I decided to go into Kings. When I was examined I was about five centimetres dilated and so still had a way to go. The young doctor on duty felt that due to my Myasthenia and the length of my labour I should consider taking some sintocinon, a hormone which speeds up contractions. I did not want this as I had read, and spoken to women who had told me, that sometimes medical intervention at birth can lead to more and more intervention and so less and less control of the birth by the mother. Without being carelessly bravado I had decided in advance that I wanted to have my baby with the minimum of medical intervention and pain relief. I therefore told the doctor to leave and come back at the next examination, and if I had not dilated sufficiently to intervene. With the support of my midwife he agreed, and low and behold Isabella appeared unscathed and beautiful without his help.

I suppose that what I have been trying to illustrate by writing my story is that at the end of the day anyone's medical care has to be a partnership between the patient and the medical profession. It is not acceptable for doctors to treat their patients as if they are bodies to manipulate at will forgetting that each person they treat will suffer in a completely unique way. They should always be sensitive to the needs of their individual patients. But it is also true that we as patients have a responsibility to ourselves and our doctors to keep well informed of our illness, and to be assertive about what we want for ourselves. Only by being positive and active about our treatment can we either avoid or tackle the kinds of problems I faced and still face today.

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