Having children when you have EDS!

I have already explained my pregnancy, but once my baby was here I would watch him sleeping and think, "Did you get my dominant genes or not?" Well once I came back to New Zealand I wanted to make sure. I made an appointment to see a genetic counsellor and was told I should wait until he was around 4 years old. So we waited. My mother knew he had EDS the moment she held him for the first time. It was how he felt, she told me that his skin felt just the way mine did as a baby. It was the craziest coincidence once I arrived at the appointment. Ingrid Winship was the person I was going to see and it turned out that I had been her sons Kindergarten Teacher. I had always known her first name but had not made the connection at all.

Well, Ingrid put my mind at ease immediately and said that if Tristan was to have EDS, then he would be fine because I was his Mum. She looked him over and saw his visible comparisons to EDS....flat feet, hypermobility in joints and velveteen skin. So it was official, my boy had got my dominant genes and he had EDS too. Ingrid was right, because I had EDS I could 'see' for my son where he may hurt himself, jar a joint and I knew how his skin felt and how gentle to be. Our skin doesn't feel connected to the muscle, so if someone pulls your arm skin, it feels as it is being pulled off, like a burning sensation. Brushing our hair is sensitive too, as our skin moves and pulls away from the scalp it hurts.

My son did have his first really big accident at almost 5 years old. He was helping his Mummy hang out the washing and was standing on a plastic chair. The chair wobbled and he slipped and he scraped his shin on the chair. I heard the cry and couldn't believe the gash and his skin was torn away from his shin bone. I couldn't think. I picked him up, and actually couldn't remember how to drive. My heart was thumping in my chest and I couldn't believe I was dealing with this so badly. I called Mum and thank god for her, she was able to calm me down and she took charge. We rushed to the A & E and they sent us straight to Middlemore Hospital. The gash was so deep it needed to be stitch inside and out. He was still only 4 so the doctor needed to give him a general anaesthetic as he would be having plastic surgery. Then I had to sign a medical waver and I lost it. I was so upset that I had to sign a piece of paper which told me that my baby may not wake up under the general anaesthetic. I signed it as I knew my baby needed to be mended.

Mum and I watched our baby being wheeled away screaming and wanting his Mummy. I have never felt so helpless in my life and I wanted to go with him. I wanted the split leg, I wanted the pain and I wanted him to never have EDS in the first place. I cried for the whole hour we waited to hear how he was.

It turned out he was absolutely fine, thank the heavens. His scar healed really well thanks to the fantastic plastic surgeon. He was up and running around within a week and he was given antibiotic cover for any infections that may occur. Tristan went on to have two more big scars but again he came through it and was a brave boy.

I just need to tell all the people in the world that may read this, that I truly believe that my Tristan is a blessing and the most amazing and incredible child any mother could ask for. Like me he takes his EDS in his stride and isn't a victim with it. He is happy, caring, kind and so special. I am truly blessed.

Love Rowena

x x x x