Abigail
27th January 2016 - 17th May 2017
Abigail was diagnosed after she was born…..we were told all along that it was looking likely that we’d have a large baby – somewhere in the region of 8lbs!! My pregnancy went well and I went to full term. Because Abigail’s brother was induced and delivered via c-section, I was booked in for another c-section, which happened at full term plus 9 days.
When Abigail was born, we had quite the shock! Here was this tiny little girl weighing no more than 4.15 lbs and sporting a predominantly bald head with a mullet at the back! Despite our joy at the safe arrival of our beautiful baby girl, things took a turn for the worse just 15 minutes after she was born when she stopped breathing. She was quickly intubated and taken into neonatal intensive care. I remember that I didn’t get to see my daughter again until after midnight that night. When I did finally get to see her again, I remember thinking how tiny she looked.
Although she had been resuscitated and appeared to be doing well, Abigail did have a couple of fits whist in neonatal care, and just a couple of days later doctors were carrying out tests on her after noticing her low-set ears. Abigail was born on the 27 January, and just six short days later, on the 4th February,(mummy's birthday) we received her diagnosis.You never forget the day you reveied this news, and it goes without saying that 04 February 2016 will forever be marked as the worst birthday ever.
As we followed the doctor into the room, I honestly believed that it couldn’t be too serious – he had asked to see us the previous day, so as we were given 24 hours’ notice for our appointment, I naturally assumed that the diagnosis couldn’t possibly be all that bad. I was expecting to hear the words Downs’ Syndrome. That’s when he sat us down and told us that our daughter had Edwards’ Syndrome. That Abigail was incompatible with life. I didn’t understand! If Abigail was incompatible with life then how could she possibly be here with us, breathing and so full of life?
Following the diagnosis, we took Abigail home and, fearing the worst, spent time with her making memories. Days became weeks, and three weeks later, Abigail was still with us and appeared to be doing well! Since her birth Abigail has continued to shock and surprise us, and is determined to defy the doctors. She’ll be eleven months this Christmas time and is doing great!
Abigail has an amazing smile and an infectious laugh. She’s always into things, picking them up whenever she gets the chance, and can now roll over onto her side! She absolutely adores her big brother, Oliver (8), and he adores her too. Abigail is deaf and wears hearing aids, and we are hoping to get her a chair. She has been swimming but didn’t care for it much – she definitely knows her own mind and will soon let you know if something is bothering her! Abigail loves going on play dates with her friend Lexi-May. We’ve been getting out and about and doing lots of activities, such as painting with our fingers and toes.
Abigail does need an operation for a large VSD. Doctors are reluctant to do this as she does have full T18. As she was doing so well, they did re-test her, but tests confirmed that she has full T18 and our doctors are stunned by how well she is doing! There is a lot going on – we hope to get Abigail to Alderhay to have a PEG feeding tube fitted. We have a number of appointments coming up with cardiologists and anaesthetists to decide on whether to go ahead with her operation.
Abigail only has one working nostril too so they are also going to take a look at that whilst we are in - Abigail is getting a full health MOT! We are looked after day to day by Royal Preston Hospital where the nurses love Abigail to bits, as do the nurses and staff at Derian House, where we go for support and respite.
Abigail is living proof that the doctors don’t always get it right!
Big brother Oliver dotes on her and is very protective. He knows she is poorly and what her prognosis is. He doesn’t like it when she goes into hospital and has grown up a lot since Abigail was born. We all know that Abigail will do what she wants to do, and at the moment, she very much wants to live!
Selina, Phil and Oliver.
Since this article was written, Abigail sadly gained her wings on 17th May 2017.
'Like every child, she was our world. Totally compatible with life, but like so many, denied surgery. We had nearly sixteen months of pure love with her.'
Selina Fitzpatrick, Abigail's mummy.