DOCUMENT

In October last year I discovered I was pregnant which came as a huge surprise to both my partner Steve and myself. I have Limb Girdle Muscular Dystrophy and although I had investigated the possibility of being a carrier for this condition some years ago with the view to having children, I never actually imagined that I would. Steve and I have been together for almost 6 years and have been through some very tough times. Both my parents were killed in a car accident two and a half years ago and this has been the hardest experience I have ever had to deal with. We were a very close family, and I am an only child. For me it has been like losing my two best friends and most ardent supporters in life. Without their support and help I felt that having a child would be far too difficult for me to manage, plus I wasn’t sure that I was ready to become a parent at a time when I was still grieving for the loss of my own. We were referred to Genetic Services at Auckland Hospital and I also contacted my neurologist just to confirm his diagnosis of a few years previous which had stated I was not a carrier for my condition. We were also referred to the National Women’s Hospital to meet with an obstetrician and a physician to discuss possible implications of my pregnancy. However, they were overwhelmingly supportive and said whatever our decision they would assist us in any way they could. They didn’t put any limitations on me going through with the pregnancy and said they believed that it was more about social issues rather than any concerns for how I would cope physically. Looking back now I know how right they were. We both decided that if we were ever going to have children then it would have to be now. I felt that it was a big decision and not to be taken lightly. The care I received during my pregnancy was first class. I was part of the high-risk team at National Women’s Hospital, however I’m not sure that I needed to be as the pregnancy went extremely well. I was warned that I may have had to be admitted to hospital from 28 weeks, although this never eventuated and in fact I kept working until 2 weeks before the baby was born. My mobility was about the same (I use a walking stick when going out) and generally I felt extremely well apart from some morning sickness. I admit I was very nervous about the birth and my ability and stamina to go through that, despite the assurances of all the medical staff. All along I as very keen to have a caesarian as I felt this would be the easiest option for me. However, the hospital specialists were against this as they didn’t believe there was any need for a caesarian plus the fact that there is generally more risk associated with such a full-scale medical procedure. Luckily, I got my own way as the baby was in the breech position for some time and towards the end was not able to be turned. We had found out around 20 weeks that we were expecting a little girl which Steve was very pleased about. Once it was determined that a caesarian was the only option, we were booked in. She had to be born in the week preceeding. her due date so we chose the 14th July (Bastille Day) as we had had an extremely enjoyable Bastille Day 3 years earlier at St Malo, France. parenting • pregnancy & adoption It took a lot of worry away from us having a set day and time for the baby to be born. We live about 45 minutes from the hospital which is across the other side of Auckland and we both had worries about how we would get there on time if we were stuck in rush hour traffic, as this could easily make the journey more than 2 hours. We arrived at the hospital at 10.00am, were wheeled into theatre at 1.30pm and Georgia Denise was born at 2.29pm. The whole operation was so quick. Steve watched in horror all the surgical procedures, but I felt fine and was more worried about him fainting than anything else. I spent a week in hospital which was great. All the staff in the ward were very helpful and friendly and I felt extremely well rested by the time I went home. Despite all the. warnings about how long It takes to recover from a cesarean I was up and out of bed the next day and experienced almost no pain at all. Steve took a week off work once we came home and I was a little apprehensive about how I would manage once he returned to work. However, it hasn’t proved to be too much of a problem. Despite extensive enquiries I have not been able to access any kind of government support or home help. It appears that you are catered for if you have a child with a disability but not if you are a parent with a disability. I do have a very supportive Occupational Therapist who has helped me enormously with accessing appropriate equipment to make the job easier. This has included a change table at the correct height and a trolley basket which I use to wheel Georgia around the house in. I do not have enough strength in my arms to carry her and it is an effort for me to transfer from the trolley basket to the change table, but I have grown in confidence which has made a huge difference. Right from the outset I believed I wouldn’t be able to manage her in and out of the car so prepared myself to be more or less totally housebound. However recently I did take her out by myself for the first time which I am proud of, and I do wish I had attempted to do this earlier on. I am now working from home one day per week and expect to return to work in February or March. I am realistic about what I can and cannot do and feel strongly that I should concentrate on what I can do and leave the stuff I can’t do to someone else. This will mean putting Georgia into a childcare centre for the three days when I will be at the office. I love my job as Information Officer for the Muscular Dystrophy Association and feel that it is essential for me that I continue to work. I think for both Georgia and I this is the best solution as it will allow me to get the intellectual stimulation I need while she gets to socialise with other children. I am very interested in how other disabled parents cope, and I am always amazed at how creative and innovative people are when it comes to finding solutions for their own difficulties. Denise Ganley