We had Hermione by emergency c-section on 17th April 2004. It was a traumatic labour and delivery and also to find she was such a small baby but many tests were done on her in the first few days, and the only things that showed up as abnormal were small fontanel’s and positional talapes.
All went well for the next 16 weeks. She slept and slept and slept and fed and slept and fed. She never took to breastfeeding, which I regarded as a huge personal failure, and I expressed for as long as my milk would allow i.e. three months, when it stopped !!! My health visitor gently suggested I try formula as she wasn’t gaining weight and from then on she thrived.
At her 16 week injections the nurse noticed that she was quite floppy and wouldn’t hold her head up well, so the doctor checked her over and said that she would need to be checked over by the paediatrician as something wasn’t right, and we would get an appointment in a few weeks. I fled, in tears, to my wonderful GP, who got me an appointment the next day with Dr K and I spent the afternoon on the phone to my health visitor, NHS Direct, and anyone else who might listen. My GP said that what they would be looking for would be Down’s or Cerebral Palsy. I went into calm panic mode, and then I attacked the Internet! By 9pm I knew everything I needed to know about each condition! I kept thinking, what did I do? Drink too much Diet Coke when I was pregnant? Eat too much lettuce?? Breathe too much air?!
The next day a blood test was done which discounted Down’s, so CP was the likely option. We would have to wait and see, but in the meantime, we would have a physio come to the house (we knew our physiotherapist from day one from the talapes) and she explained to me that I might find it helpful to go to a group in Ashtead called JOG. I spent the intervening time crying, blaming myself and trying to keep family life normal. When Hermione was 20 weeks we started JOG, and I was so terrified at starting that Hubby came with me and I cried the night before and the night after (for different reasons!!)
Everyone was wonderful when I first arrived, and then I got to know more mums and dads and everyone has been wholly fantastic. JOG was hugely hard for me at first and as time went on, it became clear that Hermione did not have cerebral palsy so I felt in limbo a bit. Our hospital appointments were going well, our JOG goals were being achieved, our physio/ot/portage sessions were fine. So should l really be there? Was it just that no one was discharging me? Was I taking up a valuable space? Etc etc.
We transferred Doctor in January 2005 and had genetic testing at this time. It was important for me to find out if there was something hereditary that was wrong with Hermione as we wanted to have more babies (subsequently had Tabitha who did not have PWS). I was convinced by this time that there was nothing wrong with Hermione and that she was just a bit slow.
When the doctor called us in urgently on 4th May, I assumed that it was urgent because she had found out there was nothing wrong with Hermione and didn’t want to waste our time anymore. However, a bombshell dropped. Hermione, she had discovered, had Prader-Willi Syndrome (PWS). I had seen a chap with this on This Morning some time ago who had it, and immediately thought ‘oh god the fat thing’ and then burst into tears. I actually didn’t stop crying for 12 hours and felt a bit numb.
For a long time post diagnosis, Jog kept me going to a certain extent because I felt ‘normal’ there. Being there with other parents helped me to talk through all aspects of the diagnosis and impact on our lives with people who genuinely understand what I was going through and whom I did not have to explain PWS was or how it felt to have a child with special needs.
Hermione is now 4 and is thriving, she is on the 37th centile for weight and 10th for height. She has age appropriate speech and attends a unit at a mainstream school. She has just been Mary for the second year running in the school nativity and she is an alert, funny, happy, mischevious little girl who blends perfectly into our family. I am totally at ease with her having PWS and love my carer’s allowance and blue badge! All I really want for my children is to be happy, and Hermione certainly is that – She’s such a fabulous, wonderful, gorgeous and amazing little girl and thanks to the great start she has at Jog and the support from our wonderful physiotherapist, occupational therapist and speech therapist, and her school she will acheive her full potential I am sure.