I am determined that Zachary's life has a long lasting legacy and am trying to achieve this by helping to raise money and awareness for charities associated with his conditions and his life. This year we want to support and try to raise some money for Tiny Lives.
The Tiny Lives Trust helps to care for premature and sick newborn babies and their families in the Special Care Baby Unit of the Newcastle Neonatal Service based in Ward 35 of the Royal Victoria Infirmary in Newcastle.
After spending almost 4 weeks in this ward with Zach, Caroline and I experienced first hand the unbelievably tough and demanding work that the doctors and nurse do every single day. These people are incredible and took such great care of Zachary, which is why we really want to give something back to them this year, by fundraising to support them with their amazing work.
The fund aims to provide the highest quality of care on an ongoing basis and needs to raise funds every year to support a range of facilities, staff, and equipment, such as gel pillows, night shades and the mini boo teddies, which Caroline and Zachary loved so much!
Zachary tragically passed away in July 2015 after just 6 precious weeks.
We found out at our 20 week scan that he would be born with bilateral talipes (also known as clubfoot) but everything else looked healthy.
When Zach was first born however, he was taken to the special care baby unit, as he was having issues with his breathing due to his small nose and undersized jaw. His condition gradually got worse, resulting in a couple of major desaturations where he went blue and needed to be resuscitated. The doctors decided that the only option was for him to have surgery and he had an emergency tracheostomy, which was carried out under general anaesthetic.
In addition to this he also had EEG and MRI brain scans, which resulted in the neurologists also diagnosing Zach with having Moebius Syndrome an extremely rare life long form of facial paralysis, preventing any facial expressions including smiling. Only 1 or 2 babies per million are born with the syndrome and there are less than 200 people living with the condition in the UK. He wasn't able to blink or move his eyes from left to right. He also had a tendency to cross his eyes and didn't wince or close his eyes when crying. They have said that at least 2 of his cranial nerves in his brain stem are damaged or missing. Zachary's talipes was actually one of the symptoms of moebius syndrome.
The respiratory doctors then discovered that Zach's breathing problems were much more severe than first thought and that he was suffering from Central Sleep Apnoeas, where the brain occasionally stops telling the body to breathe. We were told this would mean that Zachary would have to spend the rest of his life attached to a ventilator.
The genetics team also found a report showing a dozen or so other patients with both Moebius Syndrome and Central Sleep Apnoea like Zachary, all of whom had significant other brain and muscle related difficulties in later life.
The decision to turn off Zachary's ventilator was the hardest, most painful decision we have ever had to make, but faced with this news it was clear that he would have no quality of life and we did not want him to suffer any longer.
We were able to bring him home with us and he lay in my arms as he left the world. He was sleeping peacefully and was not in any pain or discomfort.
Caroline and I are devastated and heartbroken. He was so perfect, so gorgeous and brought us so much happiness in the six weeks we spent with him last year. He was strong, brave and courageous.
Zachary, you be forever loved, always missed and never forgotten.