Saturday, January 31, 2009

EDS and Pregnancy!

When I was a teenager I was asked to return to hospital as I had started to ask questions about my EDS. It felt like I was still the only one in the universe. Through childhood and early teens I was teased mercilessly and gathered names such as Frankenstein! It always felt so strange that I got teased as my Mum had always hugged me and told me that I was a very "SPECIAL" child and I honestly believed it. I had so much confidence and was so proud to be the special child, that once the teasing started I was shocked. I remember a horrid girl at Corran (my Girls High School which I adored attending) told me..."Cover your legs up because they make me feel sick!" Silly girl had no idea that for years it would effect me and I hid my legs from everyone.

My first boyfriend made me feel so special again! He didn't care I had scars and he adored me just the way I was. He told me I was special and he loved me for it. C.B.H was the most incredible first love anyone girl could ask for and he has truly never been replaced.

Back to my hospital visit at 16. The genetic counsellor began to tell me about Pregnancy. Well my ears switched off and I assured them that I was never having children so don't even suggest it. I was going to travel the world, become and international singer and more famous than Michael Jackson. I didn't remember a single thing I was told and I left. Wrong time really to give out information about ones genetic condition, it is the time that every single teenager feels 'ten foot tall and bullet proof'.

In July 1996 I was living in London, having an incredible time, working in a pub and just adoring life in one of the biggest cities in the world. I wasn't eating properly, I was sleeping less than 5 hours a night and it was PARTY, PARTY, PARTY! Then one day I realised that my monthly period was a good 5 days late. I put it down to the amount of weight I had lost, but I went to 'Boots' Pharmacy anyway to get a Clear Blue Pregnancy test, (I wasn't a stupid girl, I thought I might be pregnant). Well I did the test and a faint grey line appeared in the 'Yep, your up the Duff' box. Well it said 'Clear Blue' and my line was a faint grey. I went back to Boots two more times to buy the tests, with the same results. I went to the Doctor the next day and produced my three faint grey lined tests. Her exact words were..."It doesn't matter what colour the line is in that box, it means you are pregnant". It turns out I was stupid girl after all.

I was pregnant, I was keeping my Baby and the Father was very excited. So then the questions at 3am in the mornings kept creeping back into my mind. Could I have a baby with EDS? Will I be well enough to have a baby with EDS? Would I bleed out and die? I made sure that I was under 'Hospital Care' and once I told the Midwife about my EDS she went to speak to a doctor. I thought it would be the blank faced questions about what EDS is again......but no......they knew about EDS, they had delivered babies from mothers with EDS, they had delivered babies who had EDS and you know what, all of the Doctors I dealt with said.......I'd be just fine, they would look after me and my baby.

In a Danish study they state....
· “Pregnancy is generally well-tolerated in women with Ehlers-Danlos Syndrome.... The problem is the worry that the mother will not be able to carry full term or of miscarriage".

Well I went full term, my baby was healthy and it was going to be a boy, which was just what I wanted!!!! I went into labour naturally when my water broke at 5am. I had 26 people throughout my Labour traipsing in and out of the delivery suite asking if they could have a look, a touch, a feel and by the end of my 17 hour labour I was oblivious to it. My mother was of course there for the whole 17 hours and was an amazing, amazing strength to me.

Tristan Lee Brewer arrived at 10.28pm on the 2 May 1996. He was 7 pounds, 15 oz. He had suffered from 'respiratory distress' and I was allowed a quick cuddle before he was taken to the ICU unit. My placenta chord broke unfortunately so then I needed to have that removed in an operating room. I was so happy my baby was here and he was healthy, I can't even remember the operation at all. I do remember one thing just before I was being wheeled away, I looked at the floor and there was a lot of blood. The next day my Mum would explain that I had haemorrhaged quite badly and the doctor at one point was a little bit worried. But in the end, it all turned out to be the most incredible moment of my life and I have never loved anyone or anything as much as my gorgeous son.
Here I am with my beautiful Mum and our gorgeous Tristan.
Love Rowena
x x x x