My pregnancy story
I have always wanted to be a mum, but, with having SMA Type 2, wasn't sure if it would be a reality for me.
All of my friends began starting families and I wasn't getting any younger so when I hit 33 I started to think more seriously about the possibility. After a bit of research and visits to various Doctors, I realised it was a very real possibility for me. The main concern seemed to be whether or not my lungs could handle the extra pressure of being pregnant. But after a visit to a specialist hospital in London, I was reassured that my lungs should cope perfectly well with pregnancy.
Becoming pregnant was the most exciting and yet scariest thing I've ever done, and I am a bit of a thrill seeker! I was worried about how my body would cope with the extra weight and that I would be much more tired than usual. I worried about the birth, I worried about the baby, and I worried about how much I would be able to do when the baby arrived. All the usual concerns plus lots more. However, I have a great support network of friends, family and carers so had a lot of reassurance all the way through.
I was advised to have a c section as my body would be unlikely to cope with the pushing part of a natural birth and my local hospital wanted to deliver the baby a few weeks early so as to reduce the strain on my lungs. I also had to go down to London for an overnight sleep study a couple of times during the pregnancy. Despite mine and the doctors' concerns, the pregnancy was very straightforward and my body seemed to cope amazingly well. I didn't feel anywhere near as tired as I had expected to and I managed to avoid most of the less appealing symptoms of pregnancy.
Towards the end of the pregnancy the aches and pains (mainly in my ribs) began to take their toll and I did start to get a bit fed up. But by this point the section was booked in for 36 weeks so the end was in sight.
When I went in for the big day, the anaesthetist decided he'd like to try a spinal instead of the general anaesthetic which was originally planned. Although it would have been nice to be awake and be present for the birth of my new baby, I was reluctant to divert from the plan I had geared myself up for. We decided to give it one try and if they weren't successful, go back to the original plan of the general anaesthetic. Due to the scoliosis and rods in my back, there was no space to get the needle in successfully so we reverted back to the general.
I remember very little of the rest of that day until the evening due to the morphine and general anaesthetic. Imagine that feeling, trying to piece together the random snippets of your last drunken night out, into a story that makes some sort of sense and order… well that’s how I remember that first day of my son’s life.
According to my boyfriend, who watched the whole operation, what actually happened when I was put under general was that he left the room temporarily because he got upset watching me put under. Then he returned and they got the baby out fairly quickly but he didn’t breathe for 3 minutes, and the doctors were around him trying to get him breathing. When they finally did get him breathing, he went with my boyfriend to special care. I am kind of glad I was under general, having heard all of that and reading the notes, I would not have wanted to witness that. To this day I don’t know how he coped with the trauma of witnessing that.
We named him Lio and when I finally got the chance to go and meet him that evening, it was the most emotional I have ever felt. He spent another two weeks in special care. The doctors said that it is fairly common for a baby born at 36 weeks to be slightly underdeveloped, and our baby had a tiny hole in his lung which needed a bit more time to naturally close up.
Despite the stressful start, as soon as we got Lio home, I began to feel like a mum at last. It is so much better than I had ever imagined and Lio is a very happy, content little boy. I enjoy every second with him and it has even been fun working out ways that I can do things for him myself so that I don't need as much help to look after him.
Although I can't lift him now that he is 6 months, and getting heavier every day, I can feed him and change him (with a little help). But most importantly, I can interact and play with him. I worry that this will get more difficult as he becomes more mobile but it is something which I'm already planning for and thinking of ways to get onto the floor to play with him and activities we can do in a high chair.
So far we have developed ways around most of the barriers which come with having SMA, and I think as he grows up, Lio will be full of suggestions too. He is a bright little spark and it sometimes seems as if he knows the bits I can't do as easily and he works with me.
Georgia has written a blog about her experiences which you can read here.