The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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FAP brought back my lost daughter - Part 1

Part 2 Sue her daughters story

Chris Stewart 'ia' Journal 182 January 2004

We would like to thank both Chris and The Ileostomy and Internal Pouch Support Group (www.the-ia.org.uk) for permission to reproduce this article

Familial Adenomatous Polyposis, or FAP for short, has helped to save my life and reunite me with my daughter who I gave up for adoption 38 years ago.

I was 5 years old when I visited St.Mark's Hospital in London and introduced to the first of many rectal examinations - a sygmoidoscopy. My memories of that day are vivid, being held down by a nurse and my weeping Mum. No-one explained why - perhaps they didn't think I'd understand. A simple blood test is done nowadays, which uses the technique of genetic fingerprinting, and the test is done when you are older.

Memories of my Mum are precious - her bedroom was the focal point in the home. Although I was very young, I knew she had an ileostomy. Knowledge of FAP was much more limited 50 years ago, and she must have been in a lot of pain, however she was always laughing and cuddling my brother and me. Sadly she died in August 1952 - I was just six, and my brother 2 years old. She also had three brothers, two of whom were affected by FAP as well.

After she died, Dad and I moved in with one of his sisters, and my brother with another sister, two minutes walk away. I became a 'latch-key' kid - things settled into a routine, then Dad dropped a bombshell. He remarried in April 1953, eight months after our Mum had died. Here ended my childhood. We moved to Birmingham, I never saw any family again for years, even my dog was put to sleep. Any mention about my real Mum was dealt with via icy stares. I was to be seen and not heard - cuddles with my Dad were over, their bedroom was banned. I took solace in my stepmother's older sister - she was like a mother to me, BUT, she would not tell me about my Mum.

Years passed, and to everyone's horror I became pregnant. I had to hide in my room when visitors came, my parents were churchgoers and lied to everyone, they were so ashamed of me. I unfortunately became quite rebellious, proud of what I'd done - I was about to have something I could love and would hopefully love me in return. Alas I was sent to a mother and baby home near Reading - I was then seven months pregnant. I had my baby girl on 17th January 1966. I was 19 years old with nowhere to go. I breastfed her for six weeks and then she went to her new parents - I was heartbroken. I went back home but couldn't settle, so I returned to work at the mother and baby home. I tried my best to support the girls when their babies went, and it also helped me to adjust.

I eventually received a letter from St.Mark's Hospital - they had traced me and needed to see me regarding my late mother's illness. 'What were they on about?' I thought. I caught the train home and confronted my parents. They were very cagey, I had no help from them - 'it was in the past', they both said.

I went to St.Mark's on my own. After months of tests it was proved I had FAP. I gave them all the details of my daughter (Sue) and prayed they would find her.

A few more years passed. I married my husband in 1969, had my first operation in 1974 - total colectomy and ileo-rectal anastomosis, visiting the hospital regularly. We wanted a child, but I miscarried three times, however I eventually had my son Andrew in 1980. I gave him the childhood I missed - he grew up with FAP but it never seemed to worry him. Andrew's blood was tested when he was around 15 years old - he is clear and can never pass it on.

Four years ago I had a phone call from the polyposis unit at St.Mark's Hospital - to cut a long story short they had contacted my daughter several years before, she had already had her operation (ileo-anal anastomosis) and felt it about time we met. It was wonderful - we all get on so well, I have even met her parents who thanked me for what I did. She, thank God, had a normal childhood. She has inherited so many of my ways - we sit the same, like the same food, colours, etc. Last Christmas I bought her a mauve top and she had done the same for me - it's weird sometimes! I have two grandsons from her - I pray they will be OK - only time will tell.

FAP has a strong hold on me. In January 2001 I has a pancreatic-duodectomy operation, a 'Whipples' * for short, due to polyps turning nasty in the duodenum. Only a few people have this problem - I'm one of them. It wasn't nice but I got over it, as always, then another bombshell - in March 2002 I had the dreaded operation, a total proctocolectomy resulting in a permanent ileostomy, and I hate it. I don't think I will ever come to terms with 'Percy'. But FAP did me another favour, for during all my scans before this operation they found I had ovarian cancer, which can lie undetected for ages. The surgeons dealt with it all at the same time, it was a very long operation.

I have since had six months chemotherapy and five weeks radiotherapy, the latter knocking the stuffing out of me. I went back to St.Mark's recently for a gastric swallow as 'Percy' blocks now and then, which they tell me may be due to intermittent kinking. I am now 57 years old and owe my life to St.Mark's Hospital - everyone there has been so good to me, it's been home from home. Above all they are honest with me. How do I get through it all? I laugh things away, just like my real mother did, bless her.

Since the article was written Chris has had two further operations. A radical resection and refashioned stoma end march 2008, radical nephrectomy 5weeks later.

Finally in her words May 2008 - Still suffering, but what the heck I am alive.

* Whipple's Disease - named after George Hoyt Whipple, American pathologist - an enteropathic arthropathy, also know as intestinal lipodystrophy, possibly related to a bacterial infection.

Ia Editor - Chris would like to make contact with others who suffer from FAP, particularly in her own area (Reading).

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