Hello. I have decided to start a blog detailing my journey as I aim to raise money and awareness for charities that are close to my heart. I have to be honest and say that most of these charities were unknown to me 3 months ago, before my beautiful daughter Erin was born. Tragically, Erin passed away on 1st December 2011, aged 22 days, and it is in her memory that I now aim to raise as much money as I can. I am joined in this aim by Erin's daddy.
I will begin my blog by telling you a little about Erin. We found out that our baby may have difficulties at the 12 week scan in pregnancy when she was seen to have an increased nuchal fold. We were told that this was indicative of Down's Syndrome and decided that, although we would not terminate the pregnancy, we would have amniocentesis to find out for certain. This was a terrifying experience, but ultimately led to a diagnosis of a chromosomal disorder called Turner Syndrome. We were advised that the implications of such a diagnosis were wide-ranging, but that there was a possibility our daughter would have heart problems. Due to this, it was arranged for Erin to have a heart scan within 48 hours of birth. We were told not to worry too much, however, as if there was a problem it could be fixed with surgery. Additionally, antenatal scans had shown no problems with her heart.
Erin was born at 38 +1 weeks on 9th November 2011 at 8:45am and she was totally gorgeous. There had been some concerns with her heart rate during birth and she required resuscitation after she was born, but the paediatrician checked her over and thought she looked perfectly healthy. Her daddy and I were overjoyed with our beautiful daughter who had overcome such adversity to be born (estimates suggest that 98/99% of pregnancies with Turner Syndrome miscarry). We knew straight away that she was a little figher and couldn't wait to take her home.
That afternoon, Erin had a heart scan, which the doctors thought looked fine. They sent a copy to Alder Hey Childrens Hospital for a second opinion to make sure. The next day, doctors at Alder Hey telephoned to say they wanted to scan Erin themselves. Doctors would not discharge me, so Erin went to Alder Hey with her daddy and I was told she would return in 3 -4 hours .... she didn't! The doctors at Alder Hey detected turbulence on the scans and they wanted to monitor her further. I immediately set about trying to get discharged myself and was finally reunited with my precious daughter at 9pm that night. Being 60 miles away from my new born daughter for those 9 hours was horrendous and I was so relieved when I got to Alder Hey to find out that a charity called Ronald McDonald House could provide us with free accommodation only 3 minutes from Erin's ward. We were to stay there for the next 3 weeks until Erin tragically passed away.