Zachary's Backstory

In loving memory of
Zachary Winfield
24.04.2015 - 02.07.2015
On 24th April 2015, I awoke at 8:00 in the morning with a ‘funny’ feeling. I was 38 weeks pregnant with our first child, a little boy and I had just begun my maternity leave. As I jumped out of bed my waters broke soap opera style and my contractions came quickly after that.

At 10:35pm we welcomed our beautiful baby boy Zachary into the world in our home surrounded by our family. He was perfect; I was in awe of him and I could not believe how we had made someone so beautiful. We spent 10 blissful days at home soaking in love and sharing him with family and friends until something just didn’t seem quite right. Zachary had been incredibly difficult to settle and as first-time parents we were unsure what was wrong or how to make him more comfortable. We phoned 111 as he had a slight temperature and was completely inconsolable, they advised us to head in.

When we arrived at out of hours Zachary had calmed down in the car and we waited to see a doctor. He examined Zachary and felt that nothing was wrong but said we could take him to see a Paediatrician in the hospital if we felt it was necessary. We did, and we walked over to the hospital and waited to be seen. A nurse came over and attempted to do a set of observations and she quickly noticed that something was not right, and they whisked him away to high dependency.

Sadly, Zachary spent the rest of his short life in hospital. It quickly became apparent that there was something seriously wrong with his lungs and his ability to produce sufficient oxygen. Doctors in our local hospital tried to help but it was clear they didn’t have the expertise that other leading Children’s hospitals have and so he moved to a hospital in Leicester. There, he was very unwell and on life support.

We were called in to a meeting within 24 hours of his arrival at this hospital and were advised by a doctor and his senior nurse that they believed our wonderful first born son had an ‘incompatible with life’ lung disease. They wanted to stabilize him, take a section of his lung and test if for Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACDMPV). If the result were positive, which they believed very strongly it would be, they would remove ventilation and our son would unfortunately pass away. The operation and results took over 3 days, it was agonizing. Every fragment of my being was screaming out, desperate that the doctors were wrong, and I wouldn’t have to let my son die.

On the day that the results came in we were already exhausted, terrified, and apprehensive. We were called in to a meeting and the consultants stated that the results were a miracle. They had never seen a result like this in 20 years of experience. Zachary was diagnosed with a condition called Pulmonary Interstitial Glycogenosis – he would likely survive but would need to have many medical appointments to check his heart and his lungs; we were overjoyed.

Zachary got better, he was extubated and sent back to our local hospital where I spent 2 glorious weeks soaking up our smiley boy awaiting discharge. We had home oxygen set up as he still had a very low requirement, and we were beyond thankful to be so close to resembling a normal family again. 3 days before discharge and Zachary had an ECHO on his heart, the results were terrible, and we were sent back to a specialist hospital. Zachary had pressures in his heart which we believed were related to the lung disease and controlled by a concoction of medication; it wasn’t working.

We spend 5 days in Oxford Children’s hospital before we were sat down and informed that there had been a gross misdiagnosis and our perfect, smiley, happy son did have ACDMPV all along. A disease for which we knew too well had no cure. Palliative care was our only option and our son died in the arms of his loving Daddy on 2nd July at 03:18am; wee were utterly broken.

Zachary may be physically gone from our arms, but he has changed us all as individuals. I could only be thankful to have had him and lost him, then never to have had him at all. I still ache every day for the sweet boy we all lost but take comfort from the two beautiful girls we have been blessed with since.