A local woman has decided to go public with her deeply personal life story in the hope that she might find some answers. She speaks to Mary Cody about how it feels like to be a woman with a teenager’s body.
Kate Quinn is an attractive, confident 25-year-old woman. She has overcome massive health problems since she was born but it took 23 years for doctors to diagnose her with Caudal Regression Syndrome and she is looking for answers as to why it took so long, what caused it and whether there are treatments available. Kate has yet to go through puberty and in her own words is “not developed” physically.
“That is why I went to the media. I just hit a brick wall and was told to accept it. This is not about my personal life or me wanting or not wanting a relationship as has been suggested by some people,” she said.
Kate was born with multiple health complications, including a missing valve to her heart, a kidney abnormality (one kidney was in her pelvis),bladder and bowel problems, sclerosis and her stomach was upside down and in the wrong place. At 12 she underwent surgery to have her stomach and oesophagus problems corrected.
“All through the years of going to hospital my mother though it was very unusual that I had 11 health problems without anyone diagnosing a syndrome. The doctors knew that there was something wrong before I was born because I was not growing at the rate a normal child does and I had kidney infections when I was in the womb. When I was born I was rushed to Crumlin Children’s Hospital for investigation and all my life I have suffered with kidney infections. I missed most of school and was on antibiotics most of the time and he and out of hospital on drips. Basically every health problem was treated individually and I was treated like a jigsaw. One doctor said I was like a jigsaw that they were slowly putting back together. I basically lived in Crumlin right through my childhood,” she said.
“All through my childhood I couldn’t eat properly (that was corrected at 12 through surgery) after I nearly died from bringing up pure acid. Around a year later I started eating a lot more and the next problem was with my growth. I was attending a growth hormone clinic as I was always below average height. I had to go and beg the consultants to let me try growth hormones because although my level of growth hormones was normal I was not growing. I was 3-foot-7 when I was 12 and after I got the hormones I eventually grew to 4-foot-9 by time I was 18. The next step was to go to a hormone clinic for my development as I didn’t go through a menstrual cycle at a regular age and at 19 I was put on the contraceptive pill to start it up. I menustrated when I was on the pill but not when I went off it. They investigated my ovaries and found that they weren’t proucing enough follicles and I was put on fertility treatment,” she said.
At the age of 23 Kate was diagnosed with Caudal Regression Syndrome, for which there is no known treatment. Caudal regression syndrome or sacral agenesis (or hypoplasia of the sacrum) is a little-known and rare congenital disorder in which there is abnormal fetal development of the lower spine – the caudal partition of the spine. It occurs in one out of 25,000 people. “It covers all my problems apart from my hormone problems. I was always told that I was missing part of my chromosome but that was never investigated,” she said.
Although Kate has an upbeat and positive attitude to life, she is determined to get answers to why she has never grown or developed at a normal rate.
“I recognise that things haven’t moved on from when I was a teenager and that is very hard to live with. I don’t fit in and people comment on it. I want answers and I want to know if it is too late for treatment and whether there are any treatments available. It is hard to look loke a young teenager when you are a woman, and a girl always aims to be a woman,” she said.
“Deep down I always knew that there was somethihng amiss. I never went through puberty and my body is that of a teenager and not that of an adult. I want investigations done into my chromosomes and my hormone production and I want answers for why this has happened to me. If I can, I want to get to go abroad and see if there is any treatment as I haven’t got any answers from the HSE,” she added.