Hello. My name is Kate and I am the mother of two beautiful children who both have CAH. My son Michael will be 15 in March and my daughter Stacey has just turned 12. Michael presented with CAH at two weeks old and became quite poorly until the paediatrician diagnosed him. At the time, it was a lot to take on board, especially being my first child. There was such a lot that I just didn’t understand but I was grateful that he was ’better’ once he started to take the steroids. One of the hardest things was when I had to stop breastfeeding him. I was unable to express milk but he needed to have the salt in his feeds. My then partner and I decided that because of the complications we would not have any more children. Imagine my shock when 3 years later they confirmed I was again pregnant. I understood the risks involved but we decided to go ahead with the pregnancy.

Stacey was a beautiful baby. She had the prettiest rosebud lips and jet black hair. The giving of the steroids was not a problem for me as I had been doing it for 3 years. When mine were babies, the chemist would crush the tablets into powder for me and supply them in little packets. I would then use a sort of syringe (obviously without the needle) to give them their medication. Both of my kids started to  take the pills at quite an early age. I guess they were both around the 3 year mark. I didn’t find it a problem......they just kinda did it. I guess I was lucky!

Stacey had her first op when she was 17 months old. She had vulvaplasty and a clitoral reduction. She has since had another clitoral reduction and awaits her last op when she is around the age of 16. She has been prone to UTI’s in the past and she bedwet untill last year.

Life living with CAH can be hard as most of you on this brilliant list will know, especially having two children with the condition. But I have to say, my kids have both coped so well with it. Okay, so Michael was very full of why do I have to take these pills....and when will I be better......why do I have to have blood tests etc etc. But I put that down to children being children. I have always been totally honest with then both about their condition. I don’t believe anything should be kept from them.

I live in England and it seems that from reading your posts, the hospitals and doctors deal with the condition differently. I have never had a lab result given to me from my kids blood tests. They have an appointment every 4 months to see the endocrinologist but I do the blood tests at home. They have ’pin pricks’ in their thumbs and I measure how the hydrocortisone/fludrocortisone is absorbed over a 24 hour period. The kids don’t seem to mind this so much as they view it easier than having a blood test! Both of them have slight weight problems and they both have advanced bone ages. However, the doc thinks they are doing very well and they are great kids. To be honest, they don’t particularly worry about their condition and don’t view themselves any different from any of their friends.

I have a new partner now. My kids father and I split when Stacey was 18 months old and I have raised them both on my own. My partner and I are awaiting the results of genetic testing to find out if he carries the gene. Keep your fingers crossed for me???

Anyway, I would just like to congratulate Danny of this site. It is the first I have seen. It is quite overwhelming and emotional to know that there are other people, mothers, fathers and people who have CAH going through exactly what I have for the last 15 years. I have never been in touch with anyone in all that time that has a child with the same condition. Perhaps I should have asked at the hospital but then perhaps the hospital should have helped me along there! It makes me quite angry that they have never offered any kind of support in that way.

Well thank you for allowing me to introduce my family and I and again, thank you for such a great site!!

Kate

West Midlands England.