The Brief and Beautiful life of David Fazollah Upeksa Ashwell: having a baby with an undiagnosed rare condition.
As you begin to read this, it is worth noting that this is rare; this is unlikely to happen to you – but it happened to us and we have a story to tell.
On the 4th of March 2012 our son David should be one year. I say should have been, because at 15 days old, after 13 days of his short life spent in PICU units at the Freeman Hospital Newcastle and The James Cook University Hospital, Middlesbrough, David died in my arms.
At 1518 on Friday 4th March after an unremarkable delivery and a very easy pregnancy David Fazollah Upeksa Ashwell was born. A beautiful boy weighing 3.6kg or 7lb 14oz with lots of dark hair and the softest skin imaginable came into our world and we were overwhelmed with love and emotion. I was rather exhausted after over 11 hours of labour but every second was worth it for the stunning boy that appeared. I held David in my arms through the corridors and was met with admiring glances at our beautiful son. I was so proud of my gorgeous little man, and was so looking forward to showing him off to the world. Little did I know then, how our days were numbered and how much I would treasure that feeling of holding him in my arms.
To cut a long, and very difficult, story short David became ill on his second night, first night at home. Over the next 10 days or so, David would show signs of improvement followed by great dips of deterioration. On the 13th day of his life, David went to theatre to have a lung biopsy. After two weeks of watching David being poked, prodded and attached to machines that made loud noises, this was yet another traumatic day. But the worse was still to come. On the 14th day of his life we were given the results of the lung biopsy. David had Alveolar Capillary Dysplasia (ACD) a rare and fatal lung condition. There is no cure, there is no treatment; it was time to turn the machines with all their incessant beeping off. All our immediate family came back to Newcastle to say goodbye to the little baby who was going to be with us so briefly.
While we only had two short days while David was in good health, the following 2 weeks were the most difficult of our lives and, at the same time, the most consciously precious. It frequently felt like being trapped in a nightmare from which we couldn’t wake and we pinched ourselves on a number of occasions. We had a number of highly fraught journeys up and down the A19 in the middle of the night, phone calls which brought only bad news and sleep was something which we caught in snatches on hospital waiting room chairs.
However amongst the nightmare were some precious moments. The cuddles with David on PICU and the brief moments when he opened his eyes and looked straight into ours, when he gripped our fingers tightly. These moments made all of the waiting, uncertainty, and sitting on PICU worthwhile and provided us with some hope.
ACD is extremely rare, only 200 reported cases worldwide, so many basic questions need to be answered about this condition. More research is required to try to answer parent’s questions, like will this happen again? Simon and I have focused much of our energy into running The David Ashwell Foundation, which fundraises for ACD research. We have a number of fundraisers including Simon and colleagues from James Cook cycling coast-to-coast in one day. There is more information about the foundation and the fundraisers here: www.virginmoneygiving.com/char ities/davidashwellfoundation
While this is unlikely to happen to you, I think it is important to remember that infant death could affect someone you know or even someone you went to antenatal class with. When it does, unfortunately, happen the parents-to-be will have just had the most huge disappointment of their life. This is a particular kind of grief and a unique form of grieving; they are grieving a future with the child that never came home. Everyone handles grief differently, but please don’t forget these parents, please include them. They can say no, but it hurts more being excluded. Being with young infants or pregnant women may be painful for them, however they simply want their own child and are not jealous or craving to have yours. Don’t ignore them; don’t ignore the fact that they had a baby. Try to show sympathy without crying every time you see them. Being immersed in grief and having people talk to you with tear filled eyes doesn’t necessarily help, but then neither does ignoring the fact. It’s a fine balance and it’s better to be up-front with them and ask ‘would you like me to talk about [baby’s name]?’ Most important, in our opinion, is to talk to them about that precious infant, because acknowledgment of that life, however brief is most precious.
On a personal level, I miss so many things. Mainly I miss my beautiful little boy and my chance to be his mother, but there are other small things. Hardly anyone has asked me about the delivery after weeks and months of preparing for that event, it got overtaken by a somewhat larger event. I don’t see or have any contact from any of my antenatal friends, I’d love to know how they are getting on, how their babies are...
Simon and I are almost 12 months down the line from losing our precious son. Time doesn’t heal, you just get better adapted to living with your loss. Some of the most supportive people locally have been friends whose son is 3 weeks older than David and who we see regularly. Huge amounts of support have been found with the small group of international and UK ACD parents. Our common shared experience unites us across all kinds of cultural even language barriers. We have found comfort in turning our grief into energy to fundraise for a condition which is so rare and where so little is known. Research will only happen if the group of parents worldwide fundraise.
If we could capture and save the happiness, joy and contentment that we felt in the first few minutes, hours and days following David’s birth we would be smiling for the rest of our lives. However events have turned out somewhat differently. My son is known to the wonderful nurses and medics on the wards at Freeman and James Cook, however to those who ask I am more than happy to share the beautiful and the heart wrenching story of our son’s short life.